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AfME: Discussions with CFS Research Foundation

Messages
13,774
With PACE, AfME has an ideal way of showing that they have changed and now recognise that patients deserve to be spoken to honestly and with respect. Their insider role means that they're in a powerful position to criticise the way in which results were misrepresented and spun, and call for the release of results for the outcome measures from the protocol. They keep refusing to do so. They should be calling for the release of more information... instead they're providing statements to QMUL for fighting against FOI requests and help keep patients in the dark.

I just re-read the statement...

How could it encourage hope?

Edit: My comments in bold.

Sonya says, “I am aware that some members of the patient community are likely to be critical of Action for M.E. for considering accepting the CFS Research Foundation’s donation of funds in view of the research project it is currently funding. [Why are they likely to be critical? Are there good reasons for concern? Or is it just foolish anti-psychiatry, as is commonly suggested?]

“We are doing so because our Trustees believe that it is essential to foster meaningful engagement between people with M.E./CFS and researchers investigating the condition. [There is already meaningful engagement between people with ME/CFS and some researchers - but the only engagement with those who have shown themselves to be as untrustworthy as White should be based upon trying to force him to be more honest, release more data, and prevent him getting more funding.] Funding such research would mean that we can legally set out clear terms and conditions regarding required levels of communication and co-operation. [AfME's actions with PACE show that they are not able to do this effectively. Work on PACE before you decide to have another go! You should not trust yourselves to do a good job]

As a more minor aside about this project (the specifics of which I actually think are less important that the politics): Why not use other patient groups who suffer from problems with pain as a control? Otherwise, how will you know whether you are increasing your understanding of why patients with ME/CFS patients suffer so much pain, rather than just finding normal responses to chronic pain? As the project is currently designed, it looks very likely to end up with results that are of no value to patients, but can be used to justify more manipulation/rehabilitation from White.
 
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Chickadee9 said:
"Those of you who actually bothered to read the statement would have noted that 1. This project was initiated by the CFSRF last year when there was no connection with AfME...."

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The CFSRF is a founder member of the UK CFS/ME Research Collaborative (UK CMRC) which was launched in April 2013, of which AFME CEO Sonia Chaudhury is Secretariat.

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At some point in 2012 Dr Esther Crawley became a member of the CFSRF Research Committee, according to the CFSRF Trustees Report year ending March 2013. The Trustees Reports, including the Research Committees from 2009-2013 can be found in the yearly accounts on the Charity Commission site CFSRF listing. Charity number 1011900. Trustees Reports under ‘View Accounts’:

http://www.charitycommission.gov.uk/find-charities/

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The Chronic Fatigue Research Foundation became a charity in 1992. The charity funded Dr Jonathan Kerr’s gene expression research, among other research.

Numbers of patients, families and local ME groups did huge amounts of fundraising for the CFSRF over many years, in addition to making individual donations to the research charity.

Previous CFSRF research is in the Research Library:
http://cfsrf.org.uk/index.php?option=com_content&view=article&id=72:list-of-previous-research-projects&catid=37:previously-funded-research&Itemid=57


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But, in 2013, some change occurred in the CFSRF published statements. The CFSRF suddenly jumped on the Science Media Centre bandwagon of portraying patients and “many patient support groups” as historically "aggressive towards scientists", as far back as the 1980s and early 1990s.

The CFSRF retroactively claimed (on its website and in an interviewed article) that ‘many aggressive patient support groups’ were the cause of lack of ME research, and were the reason for the CFSRF being formed in the first place!

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That’s preposterous, blatantly false, unprofessional, and a horrid thing to state.

Unfortunately gullible readers probably believed that tosh.
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What patient support groups? In the 1980s and early 1990s? Little local support groups who struggled to find funds for tea, biccies and photocopying? AFME? The MEA? AFME did not even become a charity until 1995. There wasn’t even any ME internet campaigning in 1992 when the CFSRF were formed.

Why on earth would the CFSRF suddenly in 2013 start blaming mythical bogeyman “aggressive patient groups” of the 1980’s and early 1990’s for lack of interest from researchers, AND claim that the reason the CFSRF was formed was to counter the influence of “patient support groups”?

When it was patient support groups who have raised many thousands of pounds for the CFSRF over the years.


I am struggling to understand why the CFSRF would kick its patient/carer fundraisers in the teeth that way.



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The CFS Research Foundation website. ‘About Us’:

http://cfsrf.org.uk/index.php?option=com_content&view=article&id=47&Itemid=28

‘….In 1993 there was only a small amount of research into the illness and that was not of the highest standard. The situation was made worse by the aggressive attitude of many support groups towards scientists and to the medical profession as well as towards each other. Naturally researchers were becoming wary of being involved in research in such muddy waters.

The Foundation decided that a new attitude must be established so that CFS/ME was seen as a challenging illness which must be addressed with urgency by doctors and scientists. To this end the CFS Research Foundation decided that it should bring together the best minds to meet the challenge presented by this disease.’



And again, unsubstantiated accusations by the CFSRF of “aggressive patient support groups” in the 1980's and early 1990’s in this 2013 article

http://www.cfs-info.com/joomla/index.php?option=com_content&task=view&id=1921&Itemid=90

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The CFS Research Foundation website. ‘About Us’:

http://cfsrf.org.uk/index.php?option=com_content&view=article&id=47&Itemid=28

‘….In 1993 there was only a small amount of research into the illness and that was not of the highest standard. The situation was made worse by the aggressive attitude of many support groups towards scientists and to the medical profession as well as towards each other. Naturally researchers were becoming wary of being involved in research in such muddy waters.

The Foundation decided that a new attitude must be established so that CFS/ME was seen as a challenging illness which must be addressed with urgency by doctors and scientists. To this end the CFS Research Foundation decided that it should bring together the best minds to meet the challenge presented by this disease.’


And again, unsubstantiated accusations by the CFSRF of “aggressive patient support groups” in the 1980's and early 1990’s in this 2013 article

http://www.cfs-info.com/joomla/index.php?option=com_content&task=view&id=1921&Itemid=90

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Thanks for that Wildcat. It would be interesting to know who wrote that.
 
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Esther wrote: "Thanks for that Wildcat. It would be interesting to know who wrote that."


Yes. It would be interesting. Three guesses?

Vilifying, defaming and blaming the patients is a thoroughly disgusting trend.

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Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
From the original AfME statement at the top of this thread:
As part of the agreement, Action for M.E. has been asked to manage the funding (already secured and allocated by the CFS Research Foundation) for the neurophysiology of pain in M.E./CFS study.

I came across this other article published recently that I thought interesting and perhaps related to the research mentioned and described in the link:
Rheumatology Update

Chronic pain may be all in the brain

A leading international expert has called on rheumatologists to take a bigger picture view of pain in their patients.

Professor Daniel Clauw, a Professor of Anaesthesiology and Rheumatology at the University of Michigan in the US told the conference that the historical view of finding the cause of pain in the location where the patient is experiencing pain may be fundamentally flawed.

Because evidence now suggests that a lot of pain comes from the brain and spinal cord and is more about a difference in how individuals sense pain.

“The notion that I am trying to advance is that we all have a different volume control setting with respect to how pain sensitive we are and that’s largely set in the brain,” Professor Clauw told Rheumatology Update...

Read more: http://www.rheumatologyupdate.com.au/latest-news/chronic-pain-may-be-all-in-the-brain
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
7 July 2014 Action for ME Facebook

Action for M.E.
2 hrs ·
We have agreed to accept a donation of funds from the CFS Research Foundation's funds for research. The Foundation’s Trustees have decided to close the charity following the sad death of its co-founder and Honorary Director, Anne Faulkner, who was affected by M.E. since childhood. Founded in 1992 to fund biomedical research, the charity has awarded grants totalling £2 million since its inception.

Action for M.E. will manage the funding (already secured and allocated by the CFS Research Foundation) for the neurophysiology of pain in M.E./CFS study by contracted agreement with Queen Mary University, London. Read more at www.actionforme.org.uk/get-informed/news/our-news/biomedical-research-move-agreed
The link above on the website reads:
logo.gif


Biomedical research move agreed

7 July 2014

Action for M.E. has agreed to accept a donation of funds from the CFS Research Foundation's funds for research.

The Foundation’s Trustees have decided to close the charity following the sad death of its co-founder and Honorary Director, Anne Faulkner, who was affected by M.E. since childhood. Founded in 1992 to fund biomedical research, the charity has awarded grants totalling £2 million since its inception.

Action for M.E. will manage the funding (already secured and allocated by the CFS Research Foundation) for the neurophysiology of pain in M.E./CFS study by contracted agreement with Queen Mary University, London.

Sonya Chowdhury, Chief Executive, Action for M.E., says, “We are enormously honoured to be carrying on the work of the CFS Research Foundation with this valuable study. I have met with Anne Faulkner’s daughter Jane to express our thanks for her mother’s invaluable contribution to the field of M.E. research.”

This £231,410, three-year study, which has already started, uses cutting-edge technology to investigate how the brains of people with M.E./CFS experience pain and is being carried out by Prof Peter White and Dr Julius Bourke at Bart’s and the London Medical School and the Imanova Centre for Imaging Sciences, Hammersmith Hospital, London.

Jane Faulkner says, “I am absolutely delighted that this study which focuses on the appalling pain experienced by people with M.E. is now being administered by Action for M.E. The CFS Research Foundation considered this study to be of great significance, and was excited by its potential.

“It is sad that Anne Faulkner did not live to see the results, but I am sure she would be very pleased that the work was to be continued under the care and guidance of Action for M.E., an organisation she admired.”
 
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There was discussion on ME and CFS groups about CFSRF getting into bed with Peter White when they announced this project. Some patients who had supported the CRSRF contacted them at the time and stopped making donations to them.

The most likely place it was discussed in the forum was under the PACE discussions.

I've had dealing with AFME since it started and have no confidence in it or the trustees, given my personal experience. The rot is there at the top. Unless all the old trustees are voted out and replaced by people with a genuine belief in ME as medical illness without all the psychobabble then they will never change.
The problem I have with this is that maybe some stopped giving money to CFSRF when the project was announced but there must have been many - the majority - who continued to donate to raise the amazing sum of £230,000. Probably because CFSRF had a good record of supporting biomedical research over a period of 20 years and they decided to trust them. That's my guess anyway. And maybe there are people with ME out there who are not on this or any other forum and are not plugged into the issues in the way people on here are?
 
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44
What do the folk who actually dug in their pockets and provided the funding, think of this?
Don't understand your question Peggy Sue? They obviously think this project is a good idea otherwise why would they have contributed in the first place? We may find it amazing that they backed this project, given there are lots of other good projects they could have supported, but the fact is that people gave the CFSRF money for this project, knowing full well what it was on and who was doing it. As I said elsewhere, I believe they must have trusted Anne Faulkner, given her track record over 20 years in getting money together for biomedical research into ME. And remember she was doing it when others weren't, in the dark ages of the late 1990s and the 2000s!
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I think you might find that some people (donors) gave money to the CSFRF without knowing where it was going - but I might be wrong (it's been a while though I can think of one large example). Once you donate to an organisation you don't really have control over which project it ends up funding. On the other hand this project did eventually become a stand-alone funding project: but when this all took place I honestly can't remember. CSFRF were one of those organisations I was aware of but they never really entered the limelight. It truly is an astonishing sum of money to raise and I hope the research proves useful. I would like to have seen AfME be able/willing to take more of a closer interest in this study, I'll try and find out what the score is tomorrow.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
In the original statement (post #1 above) Sonya said:
Sonya says, “Having agreed with the Foundation that we will consider this, we are now exploring what needs to be put in place to take on the role of overseeing the pain study. This will entail setting up a legally binding contract with Queen Marys College which sets out clear expectations for both parties. We have worked hard with our currently funded research teams to ensure a high level of communication regarding the progress of their projects with our supporters and donors and this project would be no different.

I asked about this on Facebook and was referred earlier to this which Queen Mary's College have now signed:
Our research contracts
Any research funded by Action for M.E. is carried out subject to a contract, signed by Action for M.E. CEO Sonya Chowdhury and a senior member of staff at the institution where the research is carried out.

This contract ensures that:
  • the research is carried out with “all due skill and care and in a professional and ethical manner”
  • a named Principal Investigator has responsibility for the day to day management and output of all parts of the research
  • recruitment for posts funded by the research grant we supply must be subject to the consent of Action for M.E.
  • we have the right to suspend research that we are funding if our terms and conditions are not met
  • the research institution keep complete and accurate accounts of money spent, and provide a quarterly breakdown of all salary costs and other expenditure related to the research
  • the research team provides regular updates (exact timings depend on the length of each individual project) which can be shared with our Supporting Members
  • the research institution makes the results of the research available to the public as soon as is reasonably possible (but publication may be delayed by up to six months in order to protect any intellectual property).
 
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13,774
This contract ensures that:
  • the research is carried out with “all due skill and care and in a professional and ethical manner”

Would be interesting to know if Action for ME think that PACE lived up to those standards?

Would they be satisfied if this study was carried out in as careful and ethical a manner as PACE?
 

user9876

Senior Member
Messages
4,556
the research institution makes the results of the research available to the public as soon as is reasonably possible (but publication may be delayed by up to six months in order to protect any intellectual property).

I wonder who gets ownership of any IP if I were action for ME I would demand ownership and reasonable rights to use background IP from QMU.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
As a more minor aside about this project (the specifics of which I actually think are less important that the politics): Why not use other patient groups who suffer from problems with pain as a control? Otherwise, how will you know whether you are increasing your understanding of why patients with ME/CFS patients suffer so much pain, rather than just finding normal responses to chronic pain? As the project is currently designed, it looks very likely to end up with results that are of no value to patients, but can be used to justify more manipulation/rehabilitation from White.

It is also IMO very important to include ME patients like myself who don't suffer significant pain. Otherwise how will they be able to disentangle pain response from other symptoms and physiological/neurological aspects?
 

worldbackwards

Senior Member
Messages
2,051

Min

Guest
Messages
1,387
Location
UK
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The Chronic Fatigue Research Foundation became a charity in 1992. The charity funded Dr Jonathan Kerr’s gene expression research, among other research.

Numbers of patients, families and local ME groups did huge amounts of fundraising for the CFSRF over many years, in addition to making individual donations to the research charity.

Previous CFSRF research is in the Research Library:
http://cfsrf.org.uk/index.php?option=com_content&view=article&id=72:list-of-previous-research-projects&catid=37:previously-funded-research&Itemid=57


.
.
But, in 2013, some change occurred in the CFSRF published statements. The CFSRF suddenly jumped on the Science Media Centre bandwagon of portraying patients and “many patient support groups” as historically "aggressive towards scientists", as far back as the 1980s and early 1990s.

The CFSRF retroactively claimed (on its website and in an interviewed article) that ‘many aggressive patient support groups’ were the cause of lack of ME research, and were the reason for the CFSRF being formed in the first place!

.
That’s preposterous, blatantly false, unprofessional, and a horrid thing to state.

Unfortunately gullible readers probably believed that tosh.
.
.
What patient support groups? In the 1980s and early 1990s? Little local support groups who struggled to find funds for tea, biccies and photocopying? AFME? The MEA? AFME did not even become a charity until 1995. There wasn’t even any ME internet campaigning in 1992 when the CFSRF were formed.

Why on earth would the CFSRF suddenly in 2013 start blaming mythical bogeyman “aggressive patient groups” of the 1980’s and early 1990’s for lack of interest from researchers, AND claim that the reason the CFSRF was formed was to counter the influence of “patient support groups”?

When it was patient support groups who have raised many thousands of pounds for the CFSRF over the years.


I am struggling to understand why the CFSRF would kick its patient/carer fundraisers in the teeth that way.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





The CFS Research Foundation website. ‘About Us’:

http://cfsrf.org.uk/index.php?option=com_content&view=article&id=47&Itemid=28

‘….In 1993 there was only a small amount of research into the illness and that was not of the highest standard. The situation was made worse by the aggressive attitude of many support groups towards scientists and to the medical profession as well as towards each other. Naturally researchers were becoming wary of being involved in research in such muddy waters.

The Foundation decided that a new attitude must be established so that CFS/ME was seen as a challenging illness which must be addressed with urgency by doctors and scientists. To this end the CFS Research Foundation decided that it should bring together the best minds to meet the challenge presented by this disease.’



And again, unsubstantiated accusations by the CFSRF of “aggressive patient support groups” in the 1980's and early 1990’s in this 2013 article

http://www.cfs-info.com/joomla/index.php?option=com_content&task=view&id=1921&Itemid=90

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.

Esther Crawley' s becoming a member of their Research Committee in 2012 perhaps explains their complete turnaround and their decision to fund 'research' conducted by Prof White, thank you.


I remain shocked that AfME are once again involved with his 'research' after the charity's involvement in PACE.