STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

[Snowdrop]

From my own personal perspective, I'm not sure it's that clear cut.

What I mean is that in my own personal experience, I first started symptoms of what is now full blown severe ME/CFS that now keeps me in bed 23 hours a day in the late 80s. It was very mild, and intermittant and eventually turned moderate around the millenium. Then severe very suddenly in recent years.

So for me, I suspect if I looked at all the different criteria - London, Canadian, Fukada etc, although I've not actually done so with that aim in mind - I may well find that I started off fulfilling the 'wishy washy' mostly fatigue criteria and now have ended up following (edit -fulfilling is what I meant sorry) the more 'strict' criteria than the 25% Group Statement would prefer the Collaborative to follow.

The unpalatable truth for me personally is that at every stage of this illness (which has fluctuated rather than progressed when I was experiencing but with hindsight maybe it's progresed more than fluctuated) - I've had to give stuff up, and that at the time, within the relative scope of my knowledge and experience at that time, where I found myself after I gave something up as compared to where I found myself after I gave it up - the emotions and impact on my quality of life were the same.

It's going to sound odd, but with hindsight, the impact of me only doing 2 fun things on a day out instead of 3, has actually generated the same reactions in me, as say, last year me eyeing up the glass of water with a straw 2 inches away and wondering how to best use the energy I wasn't sure I even had to get straw to lips and water to mouth. To an outsider, they're two very different things, but in the context of one's own abilities on any given day relative to other recent days, they're the same.

So from my personal point of view and I do realise that it's probably rather an unusual one (I blame the prescription drugs ) - keeping a 'broad church' and being inclusive of all those dumped in the bucket of 'ME/CFS' is more helpful than it is a hindrance?

I absolutely understand what people have said above on both sides about influence in reply to my original posting, but the one thing that keeps tripping me up is, there's going to be a lot of dead ends before significant progress is made (and I'm no scientist so am willing to be wrong) so I genuinely don't understand how it helps our community either as specific subsets or a whole to say - well fatigue isn't ME so therefore people with those symptoms should be excluded.

Don't you need to be able to do comparisons between different 'things' (sorry I don't have the right language) - symptoms or molecules or mitochondrial wotsit behaviours and they way they either are similar or different to determine whether or not a hypothesis has value?

And being entirely selfish, I do feel tired. A lot. Even though I'm not doing anything by normal people's standards. It's one of my symptoms. I'd like it controlled or fixed. The same way I'd like everyone elses' personal 'collection' of symptoms to be controlled and fixed.

So if I'm in a minority and there's more people with more severe/ debilitating symptoms that need to be helped first, fine, I'll wait at the end of the queue, but I don't want to be slung off it entirely?

And to me, as someone who doesn't know the history or the politics, it does feel a bit like that's what people are saying, that fatigue symptoms muddy the waters and need to be excluded? (I hope I've just misunderstood though!)

Or you could think of it as: researchers who use the very loose criteria use it in order to justify that you're a head case. One who doesn't require disability benefits. And you're in need of exercise therapy and assistance in talking you out of how you feel.

Including mildly fatigued people in their research and then offering their 'effective treatment' on the full scale of ME/CFS patient cohort.
The problem is that what's being done by this group is not proper research. There are other threads here that discuss in detail why that is so.

 

[Amused]

@ Snowdrop. I take your point entirely. But Holgate set it up specifically to do proper research, so if that isn't happening then what are the alternatives?

 

[Snowdrop]

There don't seem to be any clear and easy answers. It's unfortunate. And whatever any of us thinks about the subject--it will unfold as it will unfold regardless.

After some time has gone by how do we evaluate whether the collaboration is a success? Maybe we should discuss that to discover what we think would be acceptable?

For me it's a matter of taking away the real momentum the BPS school has and redirecting it to proper research. So whatever accomplishes that.

May say more later, but now to bed.

 

[Min]

@ Snowdrop. I take your point entirely. But Holgate set it up specifically to do proper research, so if that isn't happening then what are the alternatives?

The volunteer run charity Invest in ME, who refuse to collaborate with the Wessely school of psychiatry, are fundraising for and undertaking biomedical research.


http://www.investinme.org/

 

[Firestormm]

The 25% Group Facebook page says the Scientific Advisor is Dr Vance Spence. Is this correct? Only you realise that he is Chairman of ME Research UK who are a part of the CMRC (MRC Research Collaborative).

 

[Min]

I am not the only long term supporter of MERUK puzzled by their apparent u turn and decision to work alongside White and Crawley.

 

[shahida]

This collaborative is operating in a very fraught context as we know- I think there'll be proper ME biomedical research but there'll probably also be psycho nonsense- which we'll have to hold our noses and accept to the extent that some research is better than nothing and, as Sasha pointed out, it's about time we had some proper resources and money.
It's that difficult 'c' word compromise that figures so often in real life. I think that this collaborative has credence on a political level that , unfortunately, IiME (who I support and donate to) do not. So hopefully things will inch forward. But it's hard to face, I know.

 

[Min]

there'll probably also be psycho nonsense- which we'll have to hold our noses and accept to the extent that some research is better than nothing

Research that results in harm to patients, such as PACE and I suspect GETSET and SMILE, is not better than nothing.

 

[shahida]

I agree Min - but I think there'll also be biomedical research too. It'll be compromise and i meant that this as a whole is better- because otherwise all the money will go to the Psychos. The biomedical charities such as MERUK seem to think so or they wouldn't be involved. If it got as bad as you feel then they'd exit. When you're the underdog you have to accept the fact work within the system.

 

[Wildcat]

.
Please see the points I made on this thread, Post number 103:

'.......Prof Stephen Holgate, who proposed the CMRC, announced his proposals at a Royal Society of Medicine (RSM) conference in July 2008.....his proposals were for Biomedical Research, what he called 'omics' - genomics, proteonomics, metabolomics etc. NOT more CBT and other psychological based research, which has already consumed tens of million of UK Public Money over decades......'

.

 

[shahida]

So why did he allow these people in then? Was it because he (presumably) felt he had no choice?

 

[Wildcat]

.
"So why did he allow these people in then? Was it because he (presumably) felt he had no choice?"
.
Good question. In short I don't know. It may have been because of 'no choice' but if so, how would that have actually taken place? But by including Professor White and Dr Crawley, Prof Holgate has clearly alienated numbers of patients, and clearly some charities do not want to be involved with a collaborative that includes the BPS researchers (and I don't blame them). The 'fatigue studies' and 'functional somatic syndromes' really cannot function in conjunction with the CCC/ICC and bioresearch based on those more rigourous definitions.
.

 

[Min]

.
"So why did he allow these people in then? Was it because he (presumably) felt he had no choice?"
.
Good question. In short I don't know. It may have been because of 'no choice' but if so, how would that have actually taken place? But by including Professor White and Dr Crawley, Prof Holgate has clearly alienated numbers of patients, and clearly some charities do not want to be involved with a collaborative that includes the BPS researchers (and I don't blame them). The 'fatigue studies' and 'functional somatic syndromes' really cannot function in conjunction with the CCC/ICC and bioresearch based on those more rigourous definitions.
.

It was a very strange thing to do if he wanted the patients' support . He could probably have gathered all the national charities together if he had omitted Crawley and White.

 

[Amused]

Didn't someone at some stage earlier in the thread (can't find it now, my brain is cheese today) suggest that the inclusion of the psychologists was probably the price of the official blessing (possibly MRC? I'm new to this and getting confused about which acronym belongs to which body). I think I remember they said full spectrum of researcher interests type thing was necessary.

Not sure if this is offtopic, someone mentioned them so am hoping not - was interested to see the MEA's August update of what they do - heavy emphasis on biomedical research and criticism of psychological/ psychiatric approaches. Was it you @Min who said they'd (along with AFME) had a different emphasis in the past?

 

[Amused]

And Holgate is in the news getting all excited about genetic mapping too I saw....

 

[Min]

Was it you @Min who said they'd (along with AFME) had a different emphasis in the past?

No, neither charity seem to have changed their emphasis to me.

AfME have always worked closely with the Wessely school of psychiatry They were the charity participating in the PACE trial who recommended that the only form of objective measurement be dropped.
They are taking over funding of Prof Peter White's pain study from the CFS Foundation.

 

[bailey2]

I have been severely ill for several years and until recently, was a member of both AfME and the MEA. For the majority of people who are ill (with whatever diagnosis), these are the only 2 charities on the radar. As a former member of these charities and reader of only their magazines, I was not aware of how political an illness I had contracted. In the past couple of years, however, I have seen a number of criticisms levelled against the major charities including unaccountability to members in the case of AfME.

It is only within the last couple of years that I have become even aware of the smaller charities IiME and the 25% group both of which seem to do in their different ways some excellent work.

I read that both charities have chosen to remain out of the CRC and I can clearly see on IiME’s website an explanation of the reasons for this decision. To the extent that their clear focus is on biomedical research (research which we can surely all agree is a good thing), I can partially understand this though as someone has pointed out, they don’t distance themselves from the MEA to the extent of refusing funds donated by that charity.

All I know of the 25% group’s stance is the position statement posted by Min at the beginning of this thread.

I would like to know more not least because the criticisms which many have made of the mainstream charities led me to decide not to renew my membership and to become instead a paid up member of the 25% group.

This is the first time that I have posted in this forum so as a relative newcomer and non –scientist, I may have made wrong assumptions in what I’m writing and if so, I shall no doubt be corrected.

Min has made a number of criticisms of the Collaborative but I’m not clear in what capacity Min is posting –as spokesperson for and/or officeholder in the charity or “merely” a long term member of the charity whose longevity of membership I might one day equal if I decide to remain a member. It would be helpful to me to know the answer so that I can understand how far Min’s views coincide with the views of the charity.

What I would like to know is this: am I correct in thinking that the 25% group intend not to participate either in the Collaborative or any replacement research initiative unless and until PEM is added to the diagnosis tool operating in the UK? And if so, what steps is the charity taking to achieve that aim? Or is it the case that the group intend not to participate until medical research has achieved a differentiation?

So far as I know, there is no real momentum for changing the diagnostic tool in the UK and nor are we on the brink of a research breakthrough so I am worried that the charity is going to remain forever an outsider, on the edges, while the important steps towards progress are made without the voice of the severely ill being heard.


On the issue of accountability, does the charity have a mandate from its members for its position statement? Were the members balloted? If not, how were their views ascertained? I and the other charity members are peculiarly dependent on the charity which purports to represent us when it is the only charity that represents only the severely ill. Almost by definition, none of us are likely to be able to attend an AGM. Many are too ill to consider the politics of the illness or the complexities make it impossible for them to do so.

As a result of my personal experience, I have concerns that adding PEM to the diagnostic tool will not necessarily differentiate those who have ME from those who have fatigue syndromes. I believe that only medical research will ultimately achieve that differentiation. Adding PEM may weed out many people who have only fatigue. However, it may have had the opposite effect for me. I was one of the few to be promptly diagnosed at the end of 6 months of illness but even though I was then functioning at only approximately 20% physically, I only “just fitted” the criteria (in the words of my consultant as sent to my GP). Had my consultant asked me then if I suffered from PEM, I don’t believe that I would have understood the concept. I simply wasn’t able at that time to exceed my limits and it was only when I had been ill for much longer than 6 months and was starting to enjoy some temporary improvement that I could gain a feel for what PEM was. I am not an unintelligent person, I read as much mainstream information which I could in the first few months I was ill but nevertheless I did not have the understanding of PEM which time alone gave me. So perversely for me, adding PEM to the diagnostic criteria might have resulted in me being labelled as having- actually, I don’t know how I would have been labelled. BDS in the future probably but that diagnosis wasn’t in use when I became ill.

 

[Min]

May I suggest you contact the charities themselves, I do not represent any of them.

 

[Amused]

Good points there Bailey2. I've been wondering similar things - I know that the 25% Group has past Newsletters etc on its website, and I'm slowly ploughing my way through them to see if there's anything that answers those sort of questions. And also, whether there's been anything about what they're doing instead - in addition to supporting the Rituximab Trial fundraising. Considering the statement was issued a year ago, I would expect there to have been some discussion etc.

Good news on the Trial Funding, IIME've reached their £350K target this week, which i believe goes to fund 3 phd students? The MEA already have their £60K (which has always been separate to IIME's fund raising & won't be put in IIME's hands cos of Charity Commission rules/law etc, it goes to the Rituximab Trial direct per Charles Shepherd's explanations on the MEA FB page a few months ago). Not sure what other funding is needed from elsewhere. Looking forward to finding out more about that though.

 

[Amused]

thanks Min re the AFME confirmation. I probably wasn't very clear, I meant that AFME are now supporting biomedical research in a way that they (may) not have historically? [Edit: I'm asking you cos you seem to have a lot of useful historical knowledge about what they have & haven't done in the past]

I do wonder though, if AFME hadn't been willing to be involved with the PACE Trial to write the Pacing Manual (which I understand is what happened), then I'd have more concerns about whether or not the playing field was level in comparing APT and GET and CBT - at least with the AFME involved, one would presume the therapy was given a fighting chance? cos I certainly wouldn't fancy the chances of a decent APT therapy from a group of people who've been naysaying it's effectiveness [edit: as a coping strategy] for years...