Action for M.E. – Placing Patient Views at the Heart of a New Research Strategy

December 6, 2013

Action for M.E. – the UK’s largest CFS/ME charity – launched a new research strategy in November based on the priorities identified by patients. We asked the Charity’s Chief Executive, Sonya Chowdhury, about the new strategy and also about the commitment to greater patient involvement. By Russell Fleming and Simon McGrath.

Sonya Chowdhury jpeg

Sonya Chowdhury, CEO, Action for ME

Charities have always connected with patients – many were founded by patients and are supported with patient help, but few have tried to give patients a voice when it comes to decision making.

Action for M.E. is working to do just that, a task made far more practical by the internet: consultation has never been so easy, so fast or so cheap.

At its Research Conference held at the beginning of November, Sonya Chowdhury the Chief Executive, announced a new research strategy, and what made it different, unique even, was that its’ priorities had all been determined by patients.

The New Research Strategy

The new strategy is summarised in the graphic below and is perhaps worth taking some time to consider:

AfMEstrategy

AfME Research Prioty Survey Results

Action for M.E.
Research Priority Survey Results – June 2013; click to view pdf

The priorities and themes were drawn from the top 5 patient priorities – determined by consulting the community through a survey in June, which attracted the views of 1,000 people (900 of whom had M.E.). Together, these 5 priorities won 85% of patient first-choice votes:

  1. Disease Processes and causes (underlying pathology)
  2. Better Treatments
  3. Better Diagnosis
  4. Clinical course of ME, outcomes and prognosis (Epidemiology)
  5. Severely Affected patients

To which Action for M.E. has added Prevention, Genetics and Genomics, and Biomarkers, and I doubt many would quibble with those choices.

Two promises worth highlighting are, that:

“We will fund biomedical pilot studies to stimulate mainstream funding and will develop a programme of work with others to initiate and support social policy research to support our informing and influencing work”

and

“We will partner with patients and researchers to support patient participation and keep patient voice and the heart of research”

Committed to consultation

The patient survey served to also inform the Executive Board of the UK CFS/ME Research Collaborative which had initially sought patient feedback. However, this canvassing of opinion, is not to be seen as a one-off exercise, as Sonya was quick to explain:

“We will do the same again when we set any new strategy, but that’s not to say that we wouldn’t do something sooner if there was need or something changes significantly. There has to be a level of flexibility and agility in all of our strategies and policies.

We will, however, continue to pursue our commitment to patient engagement, to participation and to giving patient’s a voice, and we will ensure that we listen on many different levels, for example through discussion threads, questions on Facebook and more surveys.

We have a list of ideas from various discussions we’ve already had such as establishing a patient reference group, focus groups (actual and virtual), and more regular consultations.”

We asked Sonya some more about the new strategy, the charity’s approach to research and what consulting patients might actually mean in practice:

What do you see as the most important thing(s) in the new research strategy? And why?

Logo_RGB_72dpi_COLOUR_WEB“I strongly believe in the need for personalised medicine and anything that helps us get to that point has to be of importance. If I had to pick two promises, or core values that underpin the strategy, these would be collaboration and participation.

I have a background in children’s rights and ensuring meaningful engagement/participation and I fundamentally believe that you achieve the best possible outcomes by working with the people that you work on behalf of.

This isn’t an optional extra; meaningful engagement and consultation with our supporting members and others, such as other M.E. charities and patient groups, has to be inherent in our work.

I also believe that we have to work collaboratively if we are to achieve the level of transformation needed for people affected by ME/CFS. That includes people with whom we may have differing views as long as we can find some common ground that is in service of achieving positive change.”

Several of the patient-determined priorities have been talked about for a long time now, for example the need to focus on severe patients, epidemiology, and biomarkers. Why do you think it has it taken so long to act upon them? And how do you think highlighting them again in this way will make a difference?

“Action for M.E. has funded work in these areas and the UK ME/CFS Biobank that we’re co-funding is collating samples including from people who are more severely affected. However, there is still a significant gap and we must increase our focus on this.

It is not right that people with M.E. are so severely disadvantaged and that there is an imbalance in mainstream funding for research. It’s even worse that we have those who are more severely affected receiving less of a focus with limited or no services and a dearth of research.

You don’t really find that with other illnesses. A researcher once described people in this group as ‘severely affected, severely neglected’. It’s unjust and therefore we have to continue not only highlighting them, but work with others to turn this into action by securing more money and more research.”

Does this strategy represent a change in direction for Action for M.E. in terms of research funding and if so, in what way? For example, your website mentions ‘biomedical’, is this now the sole determinant for qualification, to the exclusion of, say, psychological research which came last in your survey as a first choice for patients?

“Our recent funding has been used for biomedical research and so this isn’t a change of direction. What we have sought to do is to be explicit about what we do and how we do it.

There is such a momentum at present within the research field and therefore it is right to review our position and work in this area. We are also continuing our commitment to being more transparent about our work.

Our assessment for which research projects we will fund, partner and/or support is focused on, “how might this benefit people with M.E.?” and you can read our assessment criteria for partnering requests.

We should never rule anything out if there is a strong case for supporting a project, but our focus currently is on biomedical research projects.”

Action for M.E. is currently funding the following CFS/ME research projects:

Action for M.E. 2013 Call for Research Proposals

Research Fortnight

Advertisement Nov. 28, 2013

“Action for M.E. offers research grants
Action for M.E. is calling for applications for its pilot research grants; £60,000 is available for up to three projects. Applications should focus on underlying chronic changes related to M.E./CFS, particularly focusing on post-exertional fatigue, autonomic dysfunction, immune dysregulation, phenotyping, epidemiology and severe M.E.”
Research Fortnight, p 10.

How will you be actively seeking research projects and promoting CFS/ME as an exciting area of interest?

“We have circulated our ‘Call for Proposals’ as widely as possible across our network of researchers and universities as well as through social media and our Online M.E. Centre.

I have already had discussions with a number of researchers interested in submitting applications including some who are at present outside the CFS/ME field.

There are many things that make CFS/ME an exciting area of interest. Not only do you have the technological and social advances that are benefiting research more widely, but there is increasing collaboration in this field with many new discoveries yet to be made, and there is the opportunity to make a significant difference.

True, the same can be said for a number of other illness areas. However, when I talk to researchers who have recently started working in the CFS/ME field, the thing that many say is different is the higher level of patient engagement, and the commitment and passion to work in a meaningful way with researchers.”

Why do you think there remains a need for small, and potentially fragmented ‘pilot’ studies when the field is dominated by such research dating back 50 years? Isn’t it time we looked to more significant, larger, and better defined research, that includes perhaps the replication of existing research?

“We would love to be in a position to fund larger projects but we’re not. We are not just a research charity and also need funds to deliver services which provide information and support to more than 300,000 people.

We also believe that CFS/ME research is a priority, given the injustice, ignorance and neglect that exists and therefore larger research projects should have mainstream funding.

Our role is to add to, or complement mainstream funding through investing in feasibility studies and so forth. It is essential, though, that there is better collaboration between researchers so that the potential benefit from pilot projects is realised.”

Sonya on winning patients’ trust

It’s now 14 months since I came into post… and what a rollercoaster ride it’s been. At our Research Conference and AGM a couple of weeks ago, I reflected back on my first few months, and commented on how shell-shocked I think I was.

I hadn’t anticipated the level of fragmentation, frustration and anger that existed, much of it understandable given the ignorance, inequalities and actual discrimination that I also saw and heard about.

BUT… I was, and still continue to be, incredibly touched by the passion, the sheer determination and commitment that many people were taking to create the level of change that is so desperately needed.

Over the past year, I have had to front up to criticism and significant challenges to what we have said or done, both past and present. I have also received tremendous praise for things we have done, are doing and plan to do.

It is absolutely right that as a patient charity, we, and me personally, are held to account by our supporting members.

We are working hard to ensure that we engage with people affected by M.E. in a meaningful way to inform our work and to help ensure we continue to do better.

This is set out, in the form of ‘our promises’, in our Statement of Strategic Intent that we launched in May.”

I couldn’t help but notice that Professor Stephen Holgate is a member of your Research Panel. Was this a recent appointment and what role does he play?

“Stephen has been a member of our Research Panel since it was launched in January 2012. He plays a significant role in the Panel and has contributed to all of our meetings and discussions.

The Panel, which also features three supporting members chosen by their peers, reports to the Board and oversees our research work as well as helping set the strategy, identify which projects to fund and/or partner and helps to ensure accountability for the funding that we invest.

Personally, I find Stephen incredibly supportive as a sounding-board and in offering guidance. We have a strong Research Panel and Stephen is very much a part of this.”

Involving patients appears then to be a continuing focus for your work, so what’s the next step for the strategy and for continuing patient participation?

“We want to discover what our supporting members and others think about where we’ve got to and develop our plan to put this strategy into action.

We are also keen to hear how we can further engage with our supporting members and people affected by M.E. to inform our research work.

So, if anyone reading this has any views, thoughts, ideas or questions, please do contact Action for M.E.,  or you contact me direct.

We can always do better but I hope we are making good progress on really listening, responding and acting on what our supporting members and others affected by M.E. have to say.”

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84 comments

{ 84 comments… read them below or add one }

Firestormm December 6, 2013 at 3:33 am

We referred above to the recent Action for ME Research Conference – where Professor Stephen Holgate (who is also a member of the AfME Research Panel) delivered the keynote address.

The You Tube video of his speech is now available. I'm listening now – rather good I must say!

We have a thread running about Stephen's speech specifically – and I have popped the video on it this morning – HERE.

Esther12 December 6, 2013 at 8:39 am

No mention of PACE, or the role Action for ME has played in preventing patients gaining information about this vitally important trial?

Is Sonya now going to step up, and start fighting for patients to be provided with the results for the outcomes laid out in the trial's protocol? Or is she going to continue to turn away from the most important research matter facing patients today? Does she show any understanding of how the results from PACE were spun? Were these matters discussed?

Not to be rude to simon or Russ, but Sonya's responses just sound like worthless blather, and will do until she indicates a real willingness to take the side of patients against those who are happy to mislead them, and force them to make decisions from a position of ignorance.

Min December 6, 2013 at 10:32 am

The h'ghly controversial PACE trial was developed by psychiatrists 'with the help and support of the UK charity Action for ME.' AfME have been silent on the way that the data from the trial appear to have been shamelessly manipulated to make it seem as if the very exercise regimes that have been detrimental to numerous M.E. patients' health , are somehow beneficial. They have been silent on the researchers' refusal to release the deterioration rates from the trial.

AfME 'S only full members are the executive, with all the others deemed 'associate members' and refused voting rights. How is this giving them a voice?

AfME could surely fund far more biomedical research if its salary bill were not so huge. The CEO alone earns approximately £75,000 a year.This is a huge amount, and in contrast, the charity Invest in ME is run entirely by volunteers and is already funding a vital entrovirus research project, with a Rutiximab research project planned soon.Unlike AfME, Invest in ME refuse to work alongside the very psychiatrists (known to have links to the health
insurance industry) who have stifled research into myalgic encephalomyelitis since the
1960s and caused untold suffering by their insistence that the illness is a functional somatic syndrome treatable by exercise.

Yes, AfME, you could do better.

Simon December 7, 2013 at 10:20 am

What is Personalised medicine?
The AfME research strategy puts personalised medicine as the overall goal and I have to admit I was a bit hazy about what this means. Fortunately Prof Stephen Holgate explained this in more detail in his highly-recommended talk at AfME's AGM. He used breast cancer as the example:

Personalised medicine in breast cancer
There are, apparently, 15 different types of breast cancer with each different type having a different molecular cause and, crucially, needing a different treatment. As an example Stephen Holgate said that some breast cancers are due to overexpression of the oestrogen receptor on the cancer-cell surface – and such cancer responds very well to treatment with Tamoxifen (which seemed to be some kind of wonder drug when it first appeared in the 80s). But if your breast cancer isn't down to overexpression of oestrogen receptors, Tamoxifen won't help.

However, another type of breast cancer is due to overexpression of another cell receptor, HER2, and there is a different drug – trastuzumab – that will treat HER2 cancers effectively (though not other types of cancer).

Video of this (Personalised Medicine section starts at 27:40"

Later in his talk he argues that complex, chronic illnesses – including ME/CFS – will turn out to be a collection of different rare diseases.

Sing December 8, 2013 at 8:42 pm

I will quibble with the organization's choices, especially "prevention", and say that with limited money, the best choices of how to spend it are those that patients overwhelmingly selected.

Esther12 December 8, 2013 at 9:53 pm

To which Action for M.E. has added Prevention, Genetics and Genomics, and Biomarkers, and I doubt many would quibble with those choices.

So much depends on specifics. A lot of this stuff is really vague.

I agree with Sing that 'prevention' is a potentially dodgy one. We've seen how Chalder and White have spun their past work on 'prevention', and more money for them would be sickening: http://forums.phoenixrising.me/inde…o-educational-intervention-to-aid-reco.13326/

Really, it comes down to trust, and there are good reasons to not trust Action for ME to do anything other than suck up to those with power, even when they're actively misleading and mistreating patients.

Sing December 9, 2013 at 6:06 am
Esther12

To which Action for M.E. has added Prevention, Genetics and Genomics, and Biomarkers, and I doubt many would quibble with those choices.

So much depends on specifics. A lot of this stuff is really vague and could be good, could be bad.

I agree with Sing that 'prevention' is a potentially dodgy one. We've seen how Chalder and White have spun their past work on 'prevention', and more money for them would be sickening: http://forums.phoenixrising.me/inde…o-educational-intervention-to-aid-reco.13326/

Really, it comes down to trust, and there are good reasons to not trust Action for ME to do anything other than suck up to those with power, even when they're actively misleading and mistreating patients.

Well said, Esther!

Sonya Chowdhury December 9, 2013 at 11:55 am

Hi – I hope the following responds to some of the points that have been raised in the posts and hope that it's ok to pull them all into one post rather than respond to each individual post:

Action for M.E. supported the PACE trial because we believed that it would provide the NHS and other medical professionals with scientific confirmation of what people with M.E. had been telling us and other M.E. charities for years – that pacing was an effective technique for managing the symptoms of M.E.
We understand that a number of Freedom of Information requests have been made to the PACE Trial research team and will consider our position in light of any new information that is released. We do not have any plans at this stage to take any further action.
We support high quality research to gain insight into M.E. We do this by a variety of means, including sponsoring pilot schemes on the basis that they are high quality and peer reviewed. Any funding that we provide is done so following a transparent decision-making process and there is more info via the links in the article.

We added prevention to the list of priorities because, as with any illness, prevention is important. We will publish information about all research projects we fund on our Online M.E. Centre and all will go through a rigorous process, including peer review, before a decision is made. Increased transparency will ensure that we are explicit about who we are funding and why. As stated, one of the most likely next steps is to set up a patient reference group to help inform our health and research work.

While I have received many positive responses about our work and current direction, I do appreciate that for some, there remains a scepticism and lack of trust about our work. I hope that our actions will challenge this as we move forward and until then, we will continue with our commitment to opening up the dialogue. I will respond personally and appreciate the emails that I have received from individuals alongside the posts here and on other fourms/social media. Sonya

Esther12 December 9, 2013 at 12:44 pm
Sonya Chowdhury

Action for M.E. supported the PACE trial because we believed that it would provide the NHS and other medical professionals with scientific confirmation of what people with M.E. had been telling us and other M.E. charities for years – that pacing was an effective technique for managing the symptoms of M.E.
We understand that a number of Freedom of Information requests have been made to the PACE Trial research team and will consider our position in light of any new information that is released. We do not have any plans at this stage to take any further action.

That's not a terribly revealing response – sounds committee drafted and evasive to be honest. Do you understand why patients are concerned with the way in which results from PACE have been spun? Maybe you, as an individual, have decided to it's best to say nothing, but if so, why? If you do not understand these problems, I'm sure Simon would be happy to explain them to you. Maybe you do have a good understanding of these matter of patient concern, but believe that the criteria for recovery used by PACE was appropriate – in which case, I think that you should take the time to defend this view.

What could have made Action for ME think that the way in which the PACE trial was designed would lead to evidence that 'Adaptive Pacing Therapy' was preferable to CBT or GET? That even now you seem to conflate 'Adaptive Pacing Therapy' with 'pacing' as it is commonly understood and used by patients is pretty worrying to me. Who is advising you on this stuff?

You understand that FOI requests have been made, and will consider your position in light of any new information released? What is your position now?

1) A representative from Action for ME made a statement on behalf of the PACE trial researchers, arguing against the release of minutes related to changes in the trial's outcome measures. Do you think that patients should be allowed access to information on the outcome measures laid out in the PACE trial's published protocols? Are Action for ME pushing for the release of this information?
2) Are you concerned at the falsehoods used to justify deviations from this protocol (are you even aware of them)?
3) Do you think that those making misleading claims about the efficacy of treatments for CFS should be condemned for doing so? Would you like to prevent further research funding going to those researchers with a history of making misleading claims about the efficacy of their treatments?
4) Do you think that it is harmful for patients and doctors to be given misleading information about the efficacy of CBT/GET for CFS? If so, who should be held accountable for this harm, and how?

Valentijn December 9, 2013 at 1:25 pm

Excellent questions, @Esther12 . Any responses, @Sonya Chowdhury ?

Esther12 December 9, 2013 at 1:39 pm
Valentijn

Excellent questions, @Esther12 . Any responses, @Sonya Chowdhury ?

Ta Val. It would be nice to be able to understand what Action for ME think they're doing, and why.

Emma December 9, 2013 at 2:34 pm

If AfME is changing direction that is a very welcome thing, but I think this charity has a lot to prove. Other UK charities have been consistent in their demands for biomedical research and their opposition to the NICE guidelines and the psychosocial research such as the PACE trial – I have never understood why AfME has not taken that position too.

user9876 December 9, 2013 at 4:28 pm
Sonya Chowdhury

Action for M.E. supported the PACE trial because we believed that it would provide the NHS and other medical professionals with scientific confirmation of what people with M.E. had been telling us and other M.E. charities for years – that pacing was an effective technique for managing the symptoms of M.E.
We understand that a number of Freedom of Information requests have been made to the PACE Trial research team and will consider our position in light of any new information that is released. We do not have any plans at this stage to take any further action.

Significant changes were made to the PACE trial with only a trivial explanation. Where we they were more specific and data was available to check then we have found the reasons wrong. Hence we need
1) To understand that a good governance process was applied by the trial steering committee, hence the need to publish minutes. This way we will know more detail of the reasons for the given changes and whether they were adequately checked by the trial steering committee. Additionally it appears from the statistical analysis plan that the normal range and hence recovery thresholds were not covered. Unfortunately it appears AfME supported queen mary's in suppressing this data.
2) All the data including histograms for the results distributions (as listed in the statistical analysis plan). Also the original measures from the original protocol along with 3mwt (and other measures) for those who they claim are improved and recovered. Probably quite a lot of other data as well.

Without this patients and doctors looking to make clinical decisions are presented with a high degree of uncertainty. This is unacceptable when the data to clear this up exists.

You say the aim was to provide scientific conformation but whilst data appears to be cherry picked and not fully released there can be no conformation of anything. Its not just AfMEs silence that is concerning but the active support of suppressing data that appears to have been given.

I also wonder why AfME aren't calling for further meetings of the trial steering committee to review post hoc changes and uncorrected errors.

user9876 December 9, 2013 at 4:39 pm
Sonya Chowdhury

We support high quality research to gain insight into M.E.

Part of supporting high quality research is ensuring that those doing research know that they must follow strong methodologies because weaknesses will be exposed. I would argue a huge about of research money has been wasted on trials and research with poor methodology. This will only be improved by challenging those carrying it out.

Peer review within a small community does not work. It allows sloppy behavior from all those with in the community. It will only be improved by pulling in people from outside.

We are currently in a situation where one researcher tells patients that they have had CFS for too long for it to be ME and claims she has cured their ME and (with no significant symptom change) says they have a dissociative disease (hysteria) due to the stress of being ill. Whilst at the same time getting huge amounts for research funding from the government. How can we reconcile such behavior with trusting someone with research money. Until there is a high level of governance applied to doctors and researches things will not improve.

Bob December 9, 2013 at 6:13 pm

I would very much like to see Action for ME explaining the actual results of the PACE trial to its members.
I think that patients have a right to know that CBT and GET are not expected to lead to any clinically useful improvements in objective outcomes (e.g. disability, employment, and welfare claims); and that roughly only 13% of mildly-moderately affected fatigued patients should expect to experience any additional subjective improvements when CBT or GET are added to SMC.

However, if the PACE trial is simply an area that AfME feels unable to visit (for whatever reason: sheer embarrassment at its involvement?), I'd perhaps be willing to overlook this if I felt that AfME were serious about transforming itself, and intended to represent patients' interests properly, going forwards. (But it's difficult to see how this is possible unless the results of the PACE trial are actually acknowledged.)

I'm impressed with the contents of the above article, and have tried to consider AfME's stated future intentions with an open mind.

The changes that Sonya outlines seem, to me, to be very promising and positive developments.

If AfME are prioritising open dialogue with patients, and transparency, then I'd very much welcome this. A move towards openness and transparency seems to me to be the most important initial step that AfME could take if it is to undergo a meaningful transformation. (AfME's AGM was an open affair, and so was the research priorities survey.)

The research priorities survey was a good example of patient engagement, and has led to a useful new set of AfME's priorities, which I can't fault.

If AfME are setting up a 'patient reference group' (and focus groups), then I think this would also be an exceptionally positive and productive development, if it's set up properly and openly.

So, yes, there are legacy (and trust) issues that AfME has its work cut-out to overcome, and we shouldn't forget those issues, but perhaps we should also cautiously welcome any meaningful changes and positive developments going forwards, and assess any new developments on their merits.

If 'preventative' research funding were to go towards Esther Crawley's cognitive-behavioural preventative strategies*, then it would make a mockery of the patient survey which put 'psychological aspects' firmly at the bottom of the list of priorities.

* University of Bristol – Chronic Fatigue Syndrome (CFS/ME) in Children:

Preventing CFS/ME in children
We are involved in early intervention projects in children and in adults. In both cases, these projects are investigating whether it is possible to identify fatigue early and offer treatment. If this is possible, we will be able to develop full trials to investgate whether this is an effective method of reducing the development of CFS/ME.

http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/

Sonya Chowdhury December 10, 2013 at 11:44 am
Bob

I would very much like to see Action for ME explaining the actual results of the PACE trial to its members.
I think that patients have a right to know that CBT and GET are not expected to lead to any clinically useful improvements in objective outcomes (e.g. disability, employment, and welfare claims); and that roughly only 13% of mildly-moderately affected fatigued patients should expect to experience any additional subjective improvements when CBT or GET are added to SMC.

However, if the PACE trial is simply an area that AfME feels unable to visit (for whatever reason: sheer embarrassment at its involvement?), I'd perhaps be willing to overlook this if I felt that AfME were serious about transforming itself, and intended to represent patients' interests properly, going forwards. (But it's difficult to see how this is possible unless the results of the PACE trial are actually acknowledged.)

I'm impressed with the contents of the above article, and have tried to consider AfME's stated future intentions with an open mind.

The changes that Sonya outlines seem, to me, to be very promising and positive developments.

If AfME are prioritising open dialogue with patients, and transparency, then I'd very much welcome this. A move towards openness and transparency seems to me to be the most important initial step that AfME could take if it is to undergo a meaningful transformation. (AfME's AGM was an open affair, and so was the research priorities survey.)

The research priorities survey was a good example of patient engagement, and has led to a useful new set of AfME's priorities, which I can't fault.

If AfME are setting up a 'patient reference group' (and focus groups), then I think this would also be an exceptionally positive and productive development, if it's set up properly and openly.

So, yes, there are legacy (and trust) issues that AfME has its work cut-out to overcome, and we shouldn't forget those issues, but perhaps we should also cautiously welcome any meaningful changes and positive developments going forwards, and assess any new developments on their merits.

If 'preventative' research funding were to go towards Esther Crawley's cognitive-behavioural preventative strategies*, then it would make a mockery of the patient survey which put 'psychological aspects' firmly at the bottom of the list of priorities.

* University of Bristol – Chronic Fatigue Syndrome (CFS/ME) in Children:

Preventing CFS/ME in children
We are involved in early intervention projects in children and in adults. In both cases, these projects are investigating whether it is possible to identify fatigue early and offer treatment. If this is possible, we will be able to develop full trials to investgate whether this is an effective method of reducing the development of CFS/ME.

http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/

Hi – I do not have access to any of the data (and have never seen any of the data) from the PACE trial and therefore cannot share it. I do understand the concerns that people have raised and the reason for the scepticism and lack of trust of Action for M.E.

A key focus for us now is to turn our intent and aspiration for meaningful patient involvement and engagement into something real and tangible. I am absolutely passionate about achieving this and am determined that we will get there. I am also committed to working with Stephen Holgate and the Collaborative to embed patient involvement in its work.

We are also exploring and responding to other suggestions and ideas about patient involvement in addition to a patient reference group.

As I've mentioned, and as is outlined in the draft strategy summary/our recent call for applications, we are keen to fund more biomedical research projects. We are also inviting our supporting members and those who donate to our current research appeal to select their top research project to help us prioritise the allocation of funding. This information will be openly available so the process and results are transparent.

Best wishes, Sonya

Esther12 December 10, 2013 at 1:23 pm
Sonya Chowdhury

Hi – I do not have access to any of the data (and have never seen any of the data) from the PACE trial and therefore cannot share it. I do understand the concerns that people have raised and the reason for the scepticism and lack of trust of Action for M.E.

A key focus for us now is to turn our intent and aspiration for meaningful patient involvement and engagement into something real and tangible. I am absolutely passionate about achieving this and am determined that we will get there.

Hi – you seem to have missed my questions.

Bob was talking about the data which is already publicly available. Presumably you have taken the time to look at this data.
Do you understand the ways in which it has been manipulated, and used to make unjustifiable claims about recovery?

Unless we stumble upon some miracle breakthrough, PACE is going to be the most important piece of research affecting how patients are treated in the UK. As the chief executive of Action for ME, you have a personal moral responsibility to fight against the spin which is being used to mislead patients, and for the release of results for the trial's protocol defined outcome measures. Nothing else you do will be able to make up for turning your back on this vital matter.

Sonya Chowdhury December 10, 2013 at 6:03 pm
Esther12
Sonya Chowdhury

Hi – I do not have access to any of the data (and have never seen any of the data) from the PACE trial and therefore cannot share it. I do understand the concerns that people have raised and the reason for the scepticism and lack of trust of Action for M.E.

A key focus for us now is to turn our intent and aspiration for meaningful patient involvement and engagement into something real and tangible. I am absolutely passionate about achieving this and am determined that we will get there.

Hi – you seem to have missed my questions.

Bob was talking about the data which is already publicly available. Presumably you have taken the time to look at this data.
Do you understand the ways in which it has been manipulated, and used to make unjustifiable claims about recovery?

Unless we stumble upon some miracle breakthrough, PACE is going to be the most important piece of research affecting how patients are treated in the UK. As the chief executive of Action for ME, you have a personal moral responsibility to fight against the spin which is being used to mislead patients, and for the release of results for the trial's protocol defined outcome measures. Nothing else you do will be able to make up for turning your back on this vital matter.

Hi Esther – I have read and digested the information that has been produced from the various PACE papers. I absolutely hear what you say about your expectations of me and the and of Action for M.E. As I stated earlier, we are not currently going to take any further actions. I accept that this is unacceptable to you and whatever I say will not make up for this. We will of course continue to ensure patient involvement in our future work.
Best wishes, Sonya

Bob December 10, 2013 at 6:05 pm
Sonya Chowdhury

A key focus for us now is to turn our intent and aspiration for meaningful patient involvement and engagement into something real and tangible. I am absolutely passionate about achieving this and am determined that we will get there. I am also committed to working with Stephen Holgate and the Collaborative to embed patient involvement in its work.

We are also exploring and responding to other suggestions and ideas about patient involvement in addition to a patient reference group.

As I've mentioned, and as is outlined in the draft strategy summary/our recent call for applications, we are keen to fund more biomedical research projects. We are also inviting our supporting members and those who donate to our current research appeal to select their top research project to help us prioritise the allocation of funding. This information will be openly available so the process and results are transparent.

Hi Sonya,
Thank you for responding. These look like very positive developments that you are leading. I'm grateful for these changes that you seem to be implementing.

Re the PACE trial. When I questioned why AfME has not explained the actual results to its members, I was referring to the published results, rather than the misinformation that was widely disseminated post-publication.
Just to clarify what I meant, the following are the actual results published in the various published papers:

CBT and GET did not lead to clinically significant improvements in objective outcomes (e.g. disability, employment hours, and welfare claims) (disability was assessed in the six minute walking distance test); and only 11-15% of participants experienced any (additional) subjective improvements for the primary outcomes when CBT or GET were added to SMC.

These actual results from the published papers are in stark contrast to the heavily promoted misinformation that there was a 30% 'recovery' rate, etc. (Although the subsequent 'recovery' paper is another story.)

It is difficult to understand why AfME has not explained these basic and central results to its members, in a factual manner.
Unless AfME understands and acknowledges these results (and ideally explains them to its members), I can't see how it can fully represent the interests of patients, as the results of the PACE trial are central to current NICE & NHS policy, etc., meaning that the results of the PACE trial affect every NHS patient.

Sonya Chowdhury December 10, 2013 at 6:11 pm
Bob
Sonya Chowdhury

A key focus for us now is to turn our intent and aspiration for meaningful patient involvement and engagement into something real and tangible. I am absolutely passionate about achieving this and am determined that we will get there. I am also committed to working with Stephen Holgate and the Collaborative to embed patient involvement in its work.

We are also exploring and responding to other suggestions and ideas about patient involvement in addition to a patient reference group.

As I've mentioned, and as is outlined in the draft strategy summary/our recent call for applications, we are keen to fund more biomedical research projects. We are also inviting our supporting members and those who donate to our current research appeal to select their top research project to help us prioritise the allocation of funding. This information will be openly available so the process and results are transparent.

Hi Sonya,
Thank you for responding. These look like very positive developments that you are leading. I'm grateful for these changes that you seem to be implementing.

Re the PACE trial. When I questioned why AfME has not explained the actual results to its members, I was referring to the published results, rather than the misinformation that was widely disseminated post-publication.
Just to clarify what I meant, the following are the actual results published in the various published papers:

CBT and GET did not lead to clinically significant improvements in objective outcomes (e.g. disability, employment hours, and welfare claims) (disability was assessed in the six minute walking distance test); and only 11-15% of participants experienced any (additional) subjective improvements for the primary outcomes when CBT or GET were added to SMC.

These actual results from the published papers are in stark contrast to the heavily promoted misinformation that there was a 30% 'recovery' rate, etc.

It is difficult to understand why AfME has not explained these basic and central results to its members, in a factual manner.
Unless AfME understands and acknowledges these results (and ideally explains them to its members), I can't see how it can fully represent the interests of patients, as the results of the PACE trial are central to current NICE & NHS policy, etc. This means that the results of the PACE trial affects every NHS patient.

Hi Bob – we revised the information on our Online M.E. Centre some time ago and do not cite a 30% recovery rate. Best wishes, Sonya

user9876 December 10, 2013 at 6:49 pm
Sonya Chowdhury

Hi Esther – I have read and digested the information that has been produced from the various PACE papers. I absolutely hear what you say about your expectations of me and the and of Action for M.E. As I stated earlier, we are not currently going to take any further actions. I accept that this is unacceptable to you and whatever I say will not make up for this. We will of course continue to ensure patient involvement in our future work.
Best wishes, Sonya

But I assume that you did take recent action to write a letter to the court looking at an FoI request for the trial steering committee saying you did not want the minutes made public. How does this help ensure patient involvment when you wish to keep things secret.

Esther12 December 10, 2013 at 7:03 pm
Sonya Chowdhury

Hi Esther – I have read and digested the information that has been produced from the various PACE papers. I absolutely hear what you say about your expectations of me and the and of Action for M.E. As I stated earlier, we are not currently going to take any further actions. I accept that this is unacceptable to you and whatever I say will not make up for this. We will of course continue to ensure patient involvement in our future work.
Best wishes, Sonya

Never-mind taking any positive action, you've not yet even explained your current position, or preference for inaction.

How do you know that whatever you say will not make up for your inaction, when you've not made any attempt to explain you current position? If you had a reasonable justification, then that would make a difference. I'm keen to see you try to change my mind. Why not try and explain yourself?

Sonya Chowdhury

Hi Bob – we revised the information on our Online M.E. Centre some time ago and do not cite a 30% recovery rate.

Did you ever? Who is advising you on this stuff?

Bob December 10, 2013 at 8:30 pm

Perhaps it's been a long time since I scrutinised AfME's online information.
I've just had a look, and there is a wide range of PACE-related information on the website, including many links to critical information.
It even includes a link to the Phoenix Rising PACE trial analysis:
http://www.actionforme.org.uk/get-i…2012/evaluating-the-results-of-the-pace-trial

The primary outcome improvement rates that I highlighted earlier (and asked why AfME hadn't published them) is actually now published prominently on AfME's website (although perhaps not explained quite as clearly as it could be) (my emphasis):

This is not the same as being recovered; it identifies an improvement for those patients that undertook CBT and GET over and above any benefit of standard medical care alone (14-16% improvement), which included advice on self-management.

http://www.actionforme.org.uk/get-informed/about-me/treatment/pacing/pace-trial

So I have to backtrack, and acknowledge that AfME has published more than I had thought.
I don't remember having seen this information before on the AfME website. But it seems that AfME's PACE information is more balanced that I thought it was.
I can't see any reference to 30% recovery rates, and I have no reason to disbelieve Sonya that any such references have been removed.
I cannot find an explanation of the objective outcomes though (i.e. disability, employment hours, and welfare benefits), and it would be nice to see these results highlighted.

The website includes a statement from BACME which I disagree with because it ignores the methodological and statistical flaws of the PACE trial:

The PACE Trial represents the highest grade of clinical evidence – a large randomised clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported.

http://www.actionforme.org.uk/get-i…-campaigns/2011/bacme-statement-on-pace-trial

So AfME's website information about the PACE trial is much better, and more balanced, than I remember it being. I guess it has grown and evolved over time and, as Sonya says, it has been amended.
Personally, I'd be reasonably satisfied if the published results of the PACE trial are disseminated clearly and honestly, and it seems that has now been accomplished to some degree on the AfME website, but with a number of omissions (i.e. the objective outcomes.)

I'm looking forward to AfME's new direction of travel, including the proposed renewed patient engagement. I hope it's a period of renewal in terms of engaging with patients, and representing the needs of patients.

Esther12 December 19, 2013 at 10:44 am

re 'prevention', I just posted in a thread about the only trial on 'prevention' I can see happening in the UK at the moment. Looks like a joke study: http://forums.phoenixrising.me/inde…e-effects-of-early-intervention-for-me.13736/

And similar/worse to the old Chalder/Wessely study which has been so repulsively spun: http://forums.phoenixrising.me/inde…o-educational-intervention-to-aid-reco.13326/

I have no idea what value anyone could claim there is to this new study.

Bob

Personally, I'd be reasonably satisfied if the published results of the PACE trial are disseminated clearly and honestly, and it seems that has now been accomplished to some degree on the AfME website, but with a number of omissions (i.e. the objective outcomes.)

That requires the release of meaningful data on recovery. That means AfME should take a proactive approach to ensuring that patients are able to access this data and are able to make informed decisions about their own health care. Instead, they seem happy to let patients be manipulated by quacks.

Leopardtail January 11, 2014 at 4:57 pm
Min

The h'ghly controversial PACE trial was developed by psychiatrists 'with the help and support of the UK charity Action for ME.' AfME have been silent on the way that the data from the trial appear to have been shamelessly manipulated to make it seem as if the very exercise regimes that have been detrimental to numerous M.E. patients' health , are somehow beneficial. They have been silent on the researchers' refusal to release the deterioration rates from the trial.

AfME 'S only full members are the executive, with all the others deemed 'associate members' and refused voting rights. How is this giving them a voice?

AfME could surely fund far more biomedical research if its salary bill were not so huge. The CEO alone earns approximately £75,000 a year.This is a huge amount, and in contrast, the charity Invest in ME is run entirely by volunteers and is already funding a vital entrovirus research project, with a Rutiximab research project planned soon.Unlike AfME, Invest in ME refuse to work alongside the very psychiatrists (known to have links to the health
insurance industry) who have stifled research into myalgic encephalomyelitis since the
1960s and caused untold suffering by their insistence that the illness is a functional somatic syndrome treatable by exercise.

Yes, AfME, you could do better.

Given that rather disgraceful salary, I will NOT be renewing my membership.

MeSci January 12, 2014 at 4:59 am
Leopardtail

Given that rather disgraceful salary, I will NOT be renewing my membership.

I find it worth it for the three £10 Goodness Direct vouchers a year, which gives me double what I pay in membership fees! :D

Leopardtail January 12, 2014 at 8:08 am
MeSci

I find it worth it for the three £10 Goodness Direct vouchers a year, which gives me double what I pay in membership fees! :D

Never had the vouchers, so can't comment on that one…
but nice to see the cheesey grin :-D

MeSci January 12, 2014 at 9:32 am
Leopardtail

Never had the vouchers, so can't comment on that one…
but nice to see the cheesey grin :-D

Look at the ads in the magazine InterAction. The Goodness Direct voucher code is in a box ad. It's the first thing I look for when the magazine arrives.

Firestormm January 15, 2014 at 10:11 am

Latest Blog from CEO Sonya Chowdhury: 15 January 2014: http://www.actionforme.org.uk/get-informed/news/our-news/ceos-blog-working-on-our-research-strategy

CEO's blog: working on our Research Strategy
15 January 2014

Based on your feedback, our CEO Sonya Chowdhury has been further developing Action for M.E’s Research Strategy.

Over the Christmas break, I took the opportunity of some rare quiet time when the emails landing in my inbox were relatively few and far between and the phones were silenced to work on our new Research Strategy.

As many of you will know, over the last few months, we have been consulting with supporting members, researchers and others affected by M.E. to inform our Strategy. The engagement has been phenomenal with approximately 1,200 people inputting in one way or another.

Alongside two research priorities surveys (one asking people affected by M.E., another asking researchers) and a roundtable discussion at our as part of our Research Conference and AGM, I have had a staggering number of emails and letters. Thanks also to Simon McGrath and Russell Fleming for their Phoenix Rising article highlighting our work and consultation.

Broad range of views
The range of views, wishes and opinions has been broad and trying to reconcile these into one Research Strategy has not been easy. There will inevitably be some that we have not acted on. But I have listened and responded to them all and each one has played a valuable role in getting to this point. To give you flavour of what people have been telling me, here are just a few examples:

  • “Stop funding research and focus on direct services and support.”
  • “Fund only research.”
  • “Prevention should not be a priority as we need a cure.”
  • “So much money has been spent trying to find a cure and we’re years away from this, so focus on prevention.”
  • “Epidemiology is not important and funding should only go into biomedical research.”
  • “If we understand more about the groups and subsets of people M.E. affects, we will gain invaluable insight that we don’t currently have.”

Continues…

Valentijn January 15, 2014 at 10:22 am

Since they are emphasizing a couple contradictory opinions, my guess is that they'll use that as an excuse to continue business as usual. Useless.

Esther12 January 15, 2014 at 10:35 am
Valentijn

Since they are emphasizing a couple contradictory opinions, my guess is that they'll use that as an excuse to continue business as usual. Useless.

That's my fear.

I think that they need a venue for open and ongoing debate, where all views and opinions are not respected, but challenged and picked apart.

One of the disappointing things here was how totally unwilling Sonya was too even attempt any real defence of Action for ME's approaches.

MeSci January 15, 2014 at 12:00 pm
Esther12

That's my fear.

I think that they need a venue for open and ongoing debate, where all views and opinions are not respected, but challenged and picked apart.

One of the disappointing things here was how totally unwilling Sonya was too even attempt any real defence of Action for ME's approaches.

I got the feeling she didn't know much about the research, or understand it.

I used to post on the AfME website, and tried posting constructive comments below abstracts in their research section. When my comments didn't appear, I contacted the mods and found that the section wasn't even being monitored. What a wasted opportunity! I had hoped for some intelligent discussion with other scientists and sciency people. At least I finally found that here! :)

Bob January 20, 2014 at 11:27 am

Action for ME

Join our M.E./CFS Patient Reference Group
20 January 2014

"Action for M.E. is setting up a Patient Reference Group to be involved in its health and/or research work, and would like to invite you to apply to join."

Read on…
http://www.actionforme.org.uk/get-informed/news/our-news/join-our-mecfs-patient-reference-group

Min February 23, 2014 at 4:33 am

AfME gave a miserable £58k to research in 2013. Their salary bill, which is huge for such a small charity, was £545k for 9 employees. The CEO earns £75k a year (the average salary for a charity CEO in the UK is about £27k), more than the research donation. The director of fundraising earns £40-50k. With salaries like this, no wonder they have so little to spend on research.

Did AfME or its employees as individuals benefit financially from their involvement in the PACE trial?

PhoenixDown February 23, 2014 at 5:50 am
Min

AfME gave a miserable £58k to research in 2013. Their salary bill, which is huge for such a small charity, was £545k for 9 employees.

http://apps.charitycommission.gov.uk/Accounts/Ends19%5C0001036419_AC_20130331_E_C.pdf
Page 27. Sad that so much money disappears into salaries, sadly most charities are like this.

Valentijn February 23, 2014 at 6:37 am

Doesn't seem like much of a charity at all, when such a huge chunk of funds are going to salaries, and so little to benefit patients. Exactly what skills do those employees possess which make such a salary warranted? It really looks like they're just raising money to pay it to themselves, with a trivial amount left over to spend on actual charitable endeavors.

Min February 23, 2014 at 6:51 am

The enormous salaries would be more suited to a large London based charity than a small Bristol based one.

AfME's total charitable expenditure in 2013 was £562.473, hardly more than their salary bill. I wish those good people who fundraise so hard for them could be made aware of this.

Leopardtail February 23, 2014 at 9:27 am

An average of 50K per staff member (excluding the MD) does seem a lot doesn't it?

A lot does depend on what 'gross salary' means though. When I ran a company if exployees bought (for example) paper on their own credit cards and submitted an expense claim, then what was paid to them still counted in 'gross salary' reporting in britain does not distinguish the two which is kind of nuts. Same goes for travel cards bought by the company.

It's also important to realise AfME acts mainly as a source of advice and support and probably spends a lot of cash on that. I would like to see (on this report) a breakdown of what is spent on 'support' vs 'charitable donations'. Support is from a financial perspective mostly about salary.

Quite why the average is so high does raise obvious questions though!

Leopardtail February 23, 2014 at 9:35 am

@MeSci
Sonya Chowdhury is actively asking those of us with ME to comment on their missions statement / goals for research. If you want to be heard and taken notice of now's the time. They complete their review by end march this year.

B.

Leopardtail February 23, 2014 at 9:37 am
MeSci

I got the feeling she didn't know much about the research, or understand it.

I used to post on the AfME website, and tried posting constructive comments below abstracts in their research section. When my comments didn't appear, I contacted the mods and found that the section wasn't even being monitored. What a wasted opportunity! I had hoped for some intelligent discussion with other scientists and sciency people. At least I finally found that here! :)

How long has Sonya been in the post MeSci?

Leopardtail February 23, 2014 at 10:04 am

@MeSci @Esther12
What do we all want to see in research?

Selecting candidates for research

Folks, I would like to hear your thoughts on the issue of selecting who takes part in research (as a subject). My concern with previous research was that because people were not severely enough affected, they probably did not even have ME as a distinct disease.

I think it's too easy to confuse severity of illness with actually having it. There are people with light fatigue and no other symptoms, they have no place in our research. There are also people with severe fatigue caused by other biochemistry – they also have no place in our research.

There are people with lighter fatigue who suffer either PEM or Fatigue with Delayed Onset – they are useful research candidates. I don't want to see people without ME determining our treatment, however nor do I want everybody having to develop severe ME before they get treatment. I want to see prompt treatment done correctly to prevent it becoming severe. I would like to see FDO or PEM as mandatory criteria.

My feeling is that we need to see the International Consensus Criteria used so that research can be compared and so that we have confidence that candidates have note been selected to suit the researcher. Clearly the research may need to have additional criteria (e.g. suffering a particular symptom) but should not contradict those basic criteria.

I would also like to require that every researcher demonstrate an adequate understanding of PEM, FDO before being permitted to do research. If they don't understand that, they understand our disease. Too many existing researchers fail to understand this, hence experience is no guarantee.

Finally I think there should be an even distribution of disease progression so that we can start to derive some clarity about cause and effect.

Disease Progression and Candidate Selection

My own view is that whatever causes the disease in the first place will be the first biomarker to appear. That as the disease progresses, more and more disturbances will appear just as their are more and more symptoms. I equally expect the treatment will get more complex as the disease progresses and that no single treatment will work in it's own.

I would like to see an assessment of current severity (at time of sampling) – e.g. using the Bell Scale.
I would also like to see reporting grouped by those severities.

If a piece of research is looking at mechanisms, I would like to see a distribution of fatigue levels so that we can see (for example) how thyroid hormone varies as the disease gets worse.

  1. This would allow us to determine why different studies show different results.
  2. It was also give GPs a much better idea what they need to look for in a particular patient
  3. Finally it would allow a proper determination of the underlying mechanism via disease progression.

If a piece of research is looking at treatment for the disease, I would like to know which of light, medium and severe fatigue benefit from it.

If the research is looking at the cause of the disease I would like to see the focus on the less severely affected, simply because they are more likely to sow the root cause with less 'knock on effects'.

What does everybody think?

MeSci February 23, 2014 at 10:37 am
Leopardtail

How long has Sonya been in the post MeSci?

I don't know. However, she has replied to questions on research in a way that suggests she knows little about it. If one knows little or nothing about a subject one should say so.

Min February 23, 2014 at 10:37 am

Leapardtail wanted a breakdown of AfME s charitable spending 2013, which is little more than their enormous salary bill (the salaries quoted before will be gross)

View attachment 6530

MeSci February 23, 2014 at 10:39 am
Leopardtail

@MeSci
Sonya Chowdhury is actively asking those of us with ME to comment on their missions statement / goals for research. If you want to be heard and taken notice of now's the time. They complete their review by end march this year.

B.

I have taken part in more surveys and consultations than I can remember, and spent a lot of time on them. I can't spare any more at the moment as I need my limited time and energy for other things, such as basic tasks and keeping the wolf from the door. I am now leaving it to others.

peggy-sue February 23, 2014 at 11:03 am

I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.

Min February 23, 2014 at 11:17 am
peggy-sue

I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.

Their accounts show only £9k a year allocated to IT.

staff costsView attachment 6531

MeSci February 23, 2014 at 12:08 pm
peggy-sue

I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.

Have you tried editing your profile?

It used to be really bad re the name issue, and showed everyone's full name, until a way was found by members to fix that – changing our 'real name' in our profiles to a made-up one! AfME frowned on this as it allegedly caused problems with their records (tough). I continued to alert people to how they could change them.

When I was last using the forums, that had been fixed, so you should be able to create a username in your profile page. Sorry I can't tell you how to get to the profile page as the website is playing up AGAIN, but I think the link is near/at the top of the main pages.

peggy-sue February 23, 2014 at 12:37 pm

Thanks, both Min and MeSci, but I got completely confused trying to do that, I just gave up.
But I'm still absolutely furious that they publish my real name.

That useless setup costs 9K a year?
I've got a relative with ME who could do a far better job in his sleep (that would be essential!) for half the price.:angel:

MeSci February 23, 2014 at 1:03 pm
peggy-sue

Thanks, both Min and MeSci, but I got completely confused trying to do that, I just gave up.
But I'm still absolutely furious that they publish my real name.

That useless setup costs 9K a year?
I've got a relative with ME who could do a far better job in his sleep (that would be essential!) for half the price.:angel:

Similar things have been said on their forums! It is very amateurish.

peggy-sue February 23, 2014 at 1:55 pm

Folk would be better off "meeting" there, then toddling off and forming a google group themselves. That's free… and it works better.
I'm afraid I thought it just went along with everything else AfME does. A lot of (meaningless) words and no action.

And an effective way of silencing folk who don't "toe the party line" and worship at the feet of the psych lobby ex-spurts.

Snowdrop February 23, 2014 at 2:33 pm

As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.

We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

Sorry if I went off topic.

Leopardtail February 23, 2014 at 5:28 pm
Snowdrop

As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.

Well the way I looked at it was this. The AfME has the size and turnover of a small company a CEO salary there would certainly be no more than she earns. 'Middle management' in Britain would generally earn less in any organisation that had them.

What concerned me more greatly though was the average of all the other salaries. The mean salary of the other pay grades (below CEO) is over £50k. For that to be average salary of any organisation raises serious concerns about how well payroll is managed. Add that the the poor research funding and I am left asking questions.

I also noticed under the 'assets' that they have been losing capital and there has been no great uplift in funding.

Regards ME charities in general. The question I keep seriously asking is why we need two major ones (The ME Association and Action for ME) it divides our voice which is not a very strong one to begin with. I agree completely that 'visibility' needs to be improved. I think our charities need to be engaging with Panorama, Dispatches, day time chat shows for Mum's and getting the word out about how we are treat, how poor services are etc. We need an 'Oprah effect' to get people who are able bodied and able minded pissed-off and unwilling to stand for it.

Snowdrop

We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

Sorry if I went off topic.

The tragedy of our illness is that (in contrast to the deaf, or the blind) we can't run our own charities due the that very lack of energy and lack treatment. I do agree though we need to find some way to be more organised and more proactive in fighting our own corner. All to often now we are represented by Doctors who are only slightly better than the one's persecuting us. They have the same disdain for everything that is not 'a drug' and the same over-emphasis on massively expensive placebo controlled trails of too few measures, while at the same time being unwilling to repeat trials/treatments on a larger scale tat show success.

There is too much ego around in ME research and too little genuine service.

It has occurred to me that an international, patient run, research fund, that allows us to decide which research got done would be a far better proposition. Equally where research has shown something productive it would allow us to get it repeated.

MeSci February 24, 2014 at 3:47 am
Snowdrop

As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.

We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

Sorry if I went off topic.

I don't think it's a good argument to say that because salaries are high in the private sector they should be similar for charities. I believe in setting good examples rather than doing what others do. I also completely reject the often-repeated argument that high salaries are needed to attract the best people. High salaries attract the greediest people. If someone really cares about a company or a cause, they will not be seeking high financial reward for their work – it should be reward in itself to a considerable extent.

As for AfME's fundraising, they invite suggestions for fundraising and then reject most of them. I suggested something that would be relatively-easy to do, mostly by members with AfME just doing some coordination, and would also raise a lot of awareness, and they replied that they didn't have the resources! I could have done a lot of it on my very-basic computer, and I could also have produced a much more professional pdf of their accounts than they have done!

If I had suggested something stereotypical like a marathon or skydiving, they probably would have said yes.

They have also demonstrated a lack of understanding of ME by having giveaways of artificially-perfumed toiletries, etc.

Min February 24, 2014 at 1:00 pm

We have an excellent volunteer run UK charity funding high quality biomedical research and conferences for medical professionals, Invest in ME. They refuse to work with the Wessely school of psychiatry.

I really can't see why we also need Action for ME who spend almost the equivalent of their charitable donations on fat cat salaries, and who are, in my opinion, betraying us by working so closely with the Wessely school of psychiatry. For me, their ultimate betrayal has been their involvement in the PACE trial.

peggy-sue February 24, 2014 at 1:31 pm

I feel a strong rebuttal of PACE and a public announcement decrying the disproven psychiatric theories would do their reputation lot of good, as would a committment to never getting involved with them again.

Coming from AfME, that should hold water in the mainstream press?

Esther12 February 24, 2014 at 2:11 pm
Min

For me, their ultimate betrayal has been their involvement in the PACE trial.

Speaking as someone who wasn't really opposed to PACE when it was first proposed, but has been utterly disgusted by the way in which results have been spun since, I don't think that their involvement was a problem, so much as their refusal to use their status as an insider to actually represent patient interests, ensure that important data was collected, and ensure that results were presented in a reasonable manner.

The specifics of their involvement with PACE are far more of the problem than the fact that they were foolish enough to get involved in the first place imo (admittedly, I do feel somewhat foolish myself for not being more cynical about PACE from the get go).

Leopardtail February 24, 2014 at 4:46 pm
Esther12

Speaking as someone who wasn't really opposed to PACE when it was first proposed, but has been utterly disgusted by the way in which results have been spun since, I don't think that their involvement was a problem, so much as their refusal to use their status as an insider to actually represent patient interests, ensure that important data was collected, and ensure that results were presented in a reasonable manner.

The specifics of their involvement with PACE are far more of the problem than the fact that they were foolish enough to get involved in the first place imo (admittedly, I do feel somewhat foolish myself for not being more cynical about PACE from the get go).

I have to agree Esther, the problem with the involvement of Psychiatry and Physiotherapy in ME is not the disciplines themselves, but the quality of the individuals. That Whyte and Crawley continue to be involved in the MRC disgusts me – it is an afront.

If CBT is targetted at discarding thought processes that waste energy it can do a lot of good. It it is targeted at removing the constant guilt that people with ME are encouraged to feel it can do a great deal of good. Likewise learning to pace physical activity in order to increase energy rather than reduce it can also do a great deal of good. Central to either form of therapy being successful is respect for the patient rather than arrogance and ignorance.

For me what's centrally missing is the involvement of people with ME in designing, monitoring and commissioning research -.ditto with treatment.

Ester, "the right stuff" did a slightly more even handed piece on ME some time ago. Have you thought about contacting them re the PACE farce?

Esther12 February 24, 2014 at 5:09 pm
Leopardtail

Ester, "the right stuff" did a slightly more even handed piece on ME some time ago. Have you thought about contacting them re the PACE farce?

A lot of it requires a lot of work to understand, so may not be ideal for a daytime show? Not sure (also, I've got other stuff I'm busy not doing!)

Leopardtail February 24, 2014 at 5:14 pm
Esther12

A lot of it requires a lot of work to understand, so may not be ideal for a daytime show? Not sure (also, I've got other stuff I'm busy not doing!)

They have a dedicated team that research issues heavily. The issue of candidate selection alone is simple enough to be understood. I realise you may have too little time or energy for this but you do stand a good chance of the issue getting aired and he does seem to have a relatively bright audience.

Esther12 February 24, 2014 at 5:51 pm

I've never actually seen it… for my 'to do' list!

MeSci February 25, 2014 at 2:55 am
Esther12

Speaking as someone who wasn't really opposed to PACE when it was first proposed, but has been utterly disgusted by the way in which results have been spun since, I don't think that their involvement was a problem, so much as their refusal to use their status as an insider to actually represent patient interests, ensure that important data was collected, and ensure that results were presented in a reasonable manner.

The specifics of their involvement with PACE are far more of the problem than the fact that they were foolish enough to get involved in the first place imo (admittedly, I do feel somewhat foolish myself for not being more cynical about PACE from the get go).

I emailed AfME with a critique of the first PACE paper soon after it was published. I don't think I ever had a reply. I think it was months later that they published a critique in their magazine InterAction, which I think was fairly good.

MeSci February 25, 2014 at 2:58 am
Esther12

I've never actually seen it… for my 'to do' list!

I wonder whether @Leopardtail means this programme. Channel 5 is not renowned for being particularly highbrow, but a few programmes are exceptions. We do need to educate all sectors of the population about ME, so no harm in trying that one, as long as it doesn't spin things the wrong way.

MeSci February 25, 2014 at 3:03 am
Leopardtail

If CBT is targetted at discarding thought processes that waste energy it can do a lot of good. It it is targeted at removing the constant guilt that people with ME are encouraged to feel it can do a great deal of good. Likewise learning to pace physical activity in order to increase energy rather than reduce it can also do a great deal of good.

Presumably you know that the type of CBT used with GET doesn't do what you refer to above. It tells people to forget what they have learned from experience, to stop associating exertion with PEM, etc., although I believe there are changes afoot to make it more sensible…along the lines of what most of us know already.

What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!

Bob February 25, 2014 at 5:43 am
MeSci

What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!

Of course we shouldn't feel guilty for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate at times.
We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways. (The quietest people often adding most value.)
Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
I sometimes feel like i'm in a constant battle, not just with my illness, but with society.

So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.

Min February 25, 2014 at 5:54 am

http://carersfight.blogspot.co.uk/2010/03/16-good-reasons-to-be-very-suspicious.html

16 Good Reasons to be very suspicious of Action for ME.

Includes:

4.

Margaret Williams

Action for ME: the other main UK patients' charity, Action for ME (AfME), has had a chequered history. In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission and the charity subsequently dropped "Chronic Fatigue". On 24th July 2003, in a statement approved by its Council of Management, the charity announced that it is funded by the Department of Health.

Psychiatrist Michael Sharpe (infamous for his "undeserving sick" comment quoted above) is one of its medical advisers, though his name does not appear on the charity literature. It is well-known that in UnumProvident's Chief Medical Officer's Report (Trends in Disability, December 2002) Sharpe wrote: "Functional symptoms are not going to go away. Privatised doctors will collude with the patient's views that they have a disabling and permanent disease. An increase in insurance claims is to be therefore anticipated. It will be imperative that social policy addresses this problem. This will not be easy. However, there are glimmers of progress. One of the major patient charities, Action for ME, is aligning itself with a more evidence-based approach. If this convergence of rehabilitation-orientated clinicians and a patient's advocacy group is successful, there could be very positive implications for insurers".

This liaison is encapsulated in the statement by Lord Turnberg (the former Sir Leslie Turnberg, President of The Royal College of Physicians): "The largest patients' charity, Action for ME, is working closely with Wessely and his colleagues on new research initiatives funded by the MRC and the NHS" (Hansard [Lords]: 22nd January 2004: Vol 656: No. 27:1186). It was under the auspices of Turnberg that the biased and highly flawed 1996 Joint Royal Colleges' Report CR54 on "CFS" was produced with his full support (see below).

Professor Anthony Pinching is currently AfME's Principal Medical Adviser. He is lead adviser on "CFS/ME" to the Department of Health and was responsible for allocating the £8.5 million grant from Government for the new "CFS" Centres that deliver only psychotherapy. His views on "CFS/ME" were set out in his article in Prescribers' Journal in 2000:40:2:99-106, published when he was Deputy Chair of the Chief Medical Officer's Working Group on "CFS/ME" ("CFS is not related to on-going exertion"; "the Oxford criteria are too narrow for clinical use"; "over-investigation can [cause patients] to seek abnormal test results to validate their illness"; "complementary therapists sometimes introduce or reinforce unhelpful illness beliefs"; "the essence of treatment is activity management and graded rehabilitation").

In March 2001 AfME produced an excellent report, Severely Neglected: M.E. in the UK. This report was the result of a membership survey of 2,338 respondents, making it the biggest survey ever done on ME in the UK. Its confidential Preliminary Report of 28th February 2001 stated: "graded exercise was reported to be the treatment that had made most people worse" but in the published version, this was changed to reporting that graded exercise made 50% of respondents worse. This makes it all the more surprising that AfME "is working closely with Wessely and his colleagues on research initiatives funded by the MRC and the NHS" when those "initiatives" are based on graded exercise.

AfME's report found that 77% of respondents experienced severe pain because of ME; nearly two out of three had received no advice from their GP on managing the illness; 70% were either never able, or were sometimes too unwell to attend a doctor's clinic; 80% of those who were bedridden by ME reported that a request for a home visit by a doctor had been refused, and that many people did not receive State benefits to which they were clearly entitled and desperately needed in order to survive.

By aligning itself with the Wessely School, who have a 20 year published track record of denigrating patients with ME, AfME has done patients with ME a massive disservice and may well have devalued the charity's own important report.

Michael Sharpe has a similar published track record to that of Wessely: he asserts that in "CFS/ME", personality factors have been shown to perpetuate disability; that no immunological, virological or nuclear imaging tests should be carried out on such patients; that "the label of CFS avoids the connotations of pseudo-diagnoses such as ME"; that "change in belief is an important factor in recovery"; that psychosocial factors are important in "CFS"; that his own view has long been "the issues around CFS/ME are the same as those surrounding (patients) who suffer conditions that are not dignified by the presence of what we call disease".

Firestormm February 25, 2014 at 6:44 am
Bob

Of course we shouldn't feel guilt for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate.
We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways.
Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
I feel like i'm in a constant battle, not just with my illness, but with society.
So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.

We have nothing to feel guilty about, and we are valuable members of society, and we are wonderful individuals in many ways. But it doesn't always feel like it.

Most of my guilt stemmed originally from the feeling that I was not being believed. And an enormous amount from simply being unable to work. The two compounded each other and dragged me down many times. I would think 'maybe I am not ill so let's get back to work and give it another try' and then 'fail' and feel even worse. Yeah it is guilt. It is guilt BIG TIME. I could go on but I won't. Those who don't feel the guilt are I think lucky. I still do even today but not to the extent that I did. Hell of a road to travel. Hell of a road.

MeSci February 25, 2014 at 6:47 am
Bob

Of course we shouldn't feel guilt for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate.
We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways.
Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
I feel like i'm in a constant battle, not just with my illness, but with society.
So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.

We have nothing to feel guilty about, and we are valuable members of society, and we are wonderful individuals in many ways. But it doesn't always feel like it.

I guess I had 'good' training in not internalising unjust attitudes, having been on the receiving end of these from my parents for as long as I can remember. I knew that it was unjust, and my feelings were of injustice and outrage, as they still are, both on my own behalf and on behalf of others who are treated unjustly. I knew that I was not, and did not do, all the bad things that were attributed to me.

Yes, early in my illness I was unsure whether I was genuinely disabled and whether I just needed to try harder to do things, partly as a result of all the false information around and the way I was treated, but as I learned more, most of the guilt turned to that familiar feeling of injustice, and such feelings are amply expressed on Phoenix Rising and other ME forums.

Yes – I occasionally feel a little guilty – but usually more regretful than guilty – when I cannot do things quickly, and hold people up, or when I have to disappoint someone, but guilt is far from 'constant'. I know that I do a lot more useful stuff than many people in paid work – indeed I have always felt a need to do this. Rather than feeling guilty I channel negative feelings into positive action. I know this is hard for severely-affected people and those obliged to continue with exhausting work and care for dependents.

Yes, we are in a constant battle, which most of us fight bravely.

It's the expression 'constant guilt' apparently attributed to most or all of us that I take issue with.

Leopardtail February 25, 2014 at 9:29 pm
MeSci

Presumably you know that the type of CBT used with GET doesn't do what you refer to above. It tells people to forget what they have learned from experience, to stop associating exertion with PEM, etc., although I believe there are changes afoot to make it more sensible…along the lines of what most of us know already.

What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!

Many people who get ME very young find that they are regarded as lazy rather than ill – it has a profound effect in relationships. The CBT when delivered the right way concerns itself with shrugging off unreasonable expectations that are founded in ignorance, not trying to explain yourself etc. My comment was about those around an ME patient 'encouraging' this feeling. For example by demanding equal levels of activity/workload complaining about 'fairness'. For some the very long time to diagnosis can cause entrenched attitudes in family that do not change with diagnosis. That was my personal experience.

Yes I am aware that the wrong form of CBT is usually given and that it's profoundly harmful. I was lucky to have received the more helpful form of CBT due to not having been diagnosed with ME at the time.

Leopardtail February 25, 2014 at 9:38 pm
MeSci

I wonder whether @Leopardtail means this programme. Channel 5 is not renowned for being particularly highbrow, but a few programmes are exceptions. We do need to educate all sectors of the population about ME, so no harm in trying that one, as long as it doesn't spin things the wrong way.

I wouldn't describe it as 'highbrow' but it is brighter than the average chat show. It does also tend to present mixed views of any topic. The previous program some years ago was the only balanced program I have ever seen on ME.

Given that medics are determined not to be objective, its seems to me that we need a route to 'Jo Public' in order to generate demand for change.

Min March 12, 2014 at 4:58 am

Maybe it's my brainfog, but whilst other UK ME charities are busy forging ahead with biomedical research and training of medical professionals, I can find nothing tangible in this statement AfME just released:

http://www.actionforme.org.uk/get-informed/news/our-news/ceos-blog-the-year-ahead

Leopardtail March 12, 2014 at 6:39 am

I have seen a few references to the PACE trial amongst the comments here and information on the current/upcoming policy from AfME.
There are a few positive and pro-active points I would like to make:

  • I agree that governance MUST be improved in all projects – a project should do what it is funded to do in the way it agreed to do it.
  • The diagnosis/identification of ME as distinct from CFS as distinct from Chronic Idiopathic Fatigue before any more projects at all are funded in Britain as least and preferably our major partners should be using one definition.
  • The criteria used need to be tested statistically on a large body of patients with ME and compared for accuracy with suitable other diesease for comparison. This would rule out criteria that pollute research populations with others diseases.
  • We also need criteria of similar rigour to provide a common method of assessing severity of the symptom group being tested and clear defintions of what constitutes mild/moderate/severe – without this results are not comparable.
  • I know the above would not be to the taste of some researchers, but that's just tough, we don't need more funds wasted on trials of PACE quality that then go on to cause us harm.
  • I would be acceptable for projects to ADD domain specific requirements (e.g. bowels problems) common criteria used throughout ME are needed in each domain.
  • We need all results tabulated (at a minimum) by disease severity – this allows us to determine who it might help/harm and to start gaining insight into disease process.
  • For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.
  • For research into biochemistry, grouping by Optimal, sub-optimal, super-optimal, high and low is need – results in Me are often subtle hence some precision and commonality are needed.
  • All such reporting must be repeated in way that prevent annuals cycles messing up results.

These measures amount to simple scientific rigour that is unacceptably lacking in ME research. Researchers in Diabetes manage some degree of consistency in reporting that we should demand loudly and eloquently. We may well need to put researched funding into resolving this issues, but that will improve all subsequent research. Irrespective of who funds our research a common and high standard of governance is needed by act of Parliament if needed.

peggy-sue March 12, 2014 at 7:15 am

The most important point you make there is one that can be applied to all research into ALL psychology., Leopardtail!

For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.

They don't know what their results mean because they never, ever take the neutral response to be a response!

In a living system, no response IS a response.
That's why computer models will never, ever be able to simulate the reality of the brain and have been on a hiding to nothing from the start. They are binary.

Goiung back over years and years of reading psychology papers, and going right back to Milgram's seminal paper,
it is amazing how many results are split 66:34.
Milgrams subjects were.

But nobody ever considered that there were 3 responses.
Unquestioning adherance to authority. -ve
Doubting authority, but allowing authority to overrule conscience. neutral
Allowing doubts to overrule authority and go with conscience. +ve

Min March 12, 2014 at 7:57 am
Leopardtail

I have seen a few references to the PACE trial amongst the comments here and information on the current/upcoming policy from AfME.
There are a few positive and pro-active points I would like to make:

  • I agree that governance MUST be improved in all projects – a project should do what it is funded to do in the way it agreed to do it.
  • The diagnosis/identification of ME as distinct from CFS as distinct from Chronic Idiopathic Fatigue before any more projects at all are funded in Britain as least and preferably our major partners should be using one definition.
  • The criteria used need to be tested statistically on a large body of patients with ME and compared for accuracy with suitable other diesease for comparison. This would rule out criteria that pollute research populations with others diseases.
  • We also need criteria of similar rigour to provide a common method of assessing severity of the symptom group being tested and clear defintions of what constitutes mild/moderate/severe – without this results are not comparable.
  • I know the above would not be to the taste of some researchers, but that's just tough, we don't need more funds wasted on trials of PACE quality that then go on to cause us harm.
  • I would be acceptable for projects to ADD domain specific requirements (e.g. bowels problems) common criteria used throughout ME are needed in each domain.
  • We need all results tabulated (at a minimum) by disease severity – this allows us to determine who it might help/harm and to start gaining insight into disease process.
  • For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.
  • For research into biochemistry, grouping by Optimal, sub-optimal, super-optimal, high and low is need – results in Me are often subtle hence some precision and commonality are needed.
  • All such reporting must be repeated in way that prevent annuals cycles messing up results.

These measures amount to simple scientific rigour that is unacceptably lacking in ME research. Researchers in Diabetes manage some degree of consistency in reporting that we should demand loudly and eloquently. We may well need to put researched funding into resolving this issues, but that will improve all subsequent research. Irrespective of who funds our research a common and high standard of governance is needed by act of Parliament if needed.

Unfortunately, Prof White (who also works for Swiss Re and the DWP) of the £5m PACE trial is now undertaking another trial of graded exercise, GETSET

http://www.controlled-trials.com/ISRCTN22975026/

Where is AfME's condemnation of more waste of public funds?

MeSci March 12, 2014 at 8:16 am
Min

Unfortunately, Prof White (who also works for Swiss Re and the DWP) of the £5m PACE trial is now undertaking another trial of graded exercise, GETSET

http://www.controlled-trials.com/ISRCTN22975026/

I'm looking forward to the day when the stupid GETS stop getting funding and official approval. Then it will be…GET LOST! :D

Leopardtail March 12, 2014 at 9:45 am
Min

Unfortunately, Prof White (who also works for Swiss Re and the DWP) of the £5m PACE trial is now undertaking another trial of graded exercise, GETSET

http://www.controlled-trials.com/ISRCTN22975026/

Where is AfME's condemnation of more waste of public funds?

There are obvious flaw in the design of this trial:

  • This trial may distort placebo response. Standard medical care for ME is essentially little care at all meaning low expectations of placebo response. GET/CBT like it or hate it involves 'personal attention' and should involve 'supportive personal contact' this means placebo should be higher in this group. For any such trial to be valid the 'placebo' has to be as convincing and reassuring as the primary treatment under assessment.
  • A proportion of ME patients improve throughout summer hence if there are improvements relative to placebo they may be 'dead and gone' the following spring any such trial needs to monitor at start, at end, and one full year from each of start and end to deliver real data.

Who is funding this study Min?

Min March 12, 2014 at 11:01 am

GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?

Leopardtail March 12, 2014 at 11:02 am

A passing thought just occurred to me, has anybody here had experience of the form of CBT that encourages one to 'monitor thought processes' and discard the ones that waste energy? That particular form has no element of 'you can think your symptoms away'

Leopardtail March 12, 2014 at 11:08 am
Min

GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?

I just checked their website, it is the research arm of the NHS. In other words having dealt with one biased funding source we pay for (the MRC) we are now paying for another. This looks very much like an attempt to make the patient responsible for GET and do it on the cheap.

MeSci March 12, 2014 at 11:57 am
Min

GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?

Just did some searching and found it here.

Grant Amount £244,056

Bob March 12, 2014 at 12:13 pm

Grant Amount £244,056

It would have paid for the Rituximab study. :rolleyes:

Min March 12, 2014 at 12:16 pm

Thankyou MeSCI. The details say:

We will ask people to rate their own health and disability at the end of the treatment period and also measure how much consequent treatment they receive afterwards, to see if those who had the GETSET need less treatment afterwards

l wonder which so-called treaments they refer to, as useless GET and CBT are the only treatments offered to myalgic encephalomyelitis sufferers in the UK. Then again, as they will probably use the Oxford criteria that Prof White, I understand helped develop, goodness knows what medical condition will be studied.

Leopardtail March 13, 2014 at 7:52 pm
Min

Thankyou MeSCI. The details say:

l wonder which so-called treaments they refer to, as useless GET and CBT are the only treatments offered to myalgic encephalomyelitis sufferers in the UK. Then again, as they will probably use the Oxford criteria that Prof White, I understand helped develop, goodness knows what medical condition will be studied.

The grant proposal says they should be receiving "specialist treatment" and already be diagnosed hence they should be NHS diagnostic guidelines. To my knowledge they have not been subjected to external validation as per Canadian and Fukuda but PEM is present. What concerns me more is the time period, many ME patients improve over summer thus perverting results. Also this is not 'placebo controlled' since they are comparing with an obvious lack of treatment.
[above content edited to reflect a correction from Firestorm]

Firestormm March 13, 2014 at 8:53 pm
Leopardtail

The grant proposal says they should be receiving "specialist treatment" and already be diagnosed hence they should be NHS diagnostic guidelines. They are better than 'Oxford' but still don't require PEM hence far from ideal. What concerns me more is the time period, many ME patients improve over summer thus perverting results. Also this is not 'placebo controlled' since they are comparing with an obvious lack of treatment.

NICE Guideline states:

Healthcare professionals should consider the possibility of CFS/ME if a person has:
fatigue with all of the following features:
− new or had a specific onset (that is, it is not lifelong)
− persistent and/or recurrent
− unexplained by other conditions
− has resulted in a substantial reduction in activity level
− characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)

Etc. etc. etc.

p. 165 http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf

Leopardtail March 14, 2014 at 9:31 am
Firestormm

NICE Guideline states:

Corrected with thanks.

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