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AfME: Discussions with CFS Research Foundation

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Discussions with CFS Research Foundation
Friday 16 May

Following the sad death of its founder and Honorary Director, Anne Faulkner, the Trustees of the CFS Research Foundation are, regretfully, considering closing the charity. They have asked Action for M.E. to accept a donation of its funds for research, and take over the responsibility of overseeing a project they are currently funding.

Sonya Chowdhury, Chief Executive, Action for M.E., says, “We are enormously honoured to be asked by the CFS Research Foundation to carry on its important work.”

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.

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."

This study, which has already started, uses cutting-edge technology to investigate how the brains of people with M.E./CFS experience pain. The £231,410, three-year study has been put through the CFS Research Foundation’s rigorous application process, meeting the criteria set by its scientific advisory panel and the charity itself. It is being carried out by Professor Peter White and Dr Julius Bourke at Bart’s and the London Medical School and the Imanova Centre for Imaging Sciences, London.

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.

“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. Funding such research would mean that we can legally set out clear terms and conditions regarding required levels of communication and co-operation.

“All our research-funded work is subject to rigorous checks and this study is no exception. Our new revised assessment process for research applications, published today, sets out how we do this for applications that are made to Action for M.E., and details our increased level of engagement with people with M.E./CFS in our research work.

“We want to be open and transparent with our Support Members about this discussion taking place, which is why we are making this announcement today. I would invite people to contact me directly if they have any questions.”

Prof White says, “Thanks to the CFS Research Foundation’s funding, we will improve our understanding of why patients with M.E./CFS suffer from so much pain. We will do this by comparing patients and healthy controls in regard to their ability to process pain, mapping out the pain pathways in the brain, and seeing how different brain chemicals are responsible for the pain.

“The study has brought in researchers new to the M.E./CFS field, especially those working at the Imanova Centre for Imaging Sciences where study participants will undergo fMRI (functional Magnetic Resonance Imaging) brain scans."

CFS Research Foundation: http://cfsrf.org.uk/index.php?optio...ch&catid=36:current-funded-research&Itemid=58
 
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manna

Senior Member
Messages
392
so they're trying to find the gene responsible for metabolising the brain chemicals, or not as the case may be, that lead to the the inability of folk with me/cfs to process pain correctly? is that correct?

The research will lead to a better understanding of how the brain is involved in pain symptoms in CFS/ME patients, how certain brain chemicals and the gene involved in their metabolism are involved and thus provide a way forward to consider more effective treatments.

well it might not lead to a better understanding for starters- open minded enquiry demands that possibility...money demands answers whatever.. it seems they have the answer they're doing the study to find out. so the study is to prove a hypothesis really.

seems afme have a spring board ;). feels like they're making a concerted effort to win hearts and minds. id happily drop the past, hopefuly they will too and not merely set out to placate people, which is my concern. they know no-one will listen if they continue the psyche angle and with the internet and scrutiny means they'll lose support if not carefull. so is the change due to a new approach, the fact they don't represent most with me/cfs or to befuddle and placate folk whilst continuing their current path?
 

Min

Guest
Messages
1,387
Location
UK
As the research is being carried out by Professor of Psychiatry Peter White of the Pace trial, the interpretaion of results of which did enormous harm to people with myalgic encephalomyelitis, this research is unlikely to help us any. AfME's willingness to work with him is astounding.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
I wish they would look at treatments instead of why we have "pain". I have lots of pain but I really don't care about why. I want an effective treatment. Not for someone to tell me why I have pain. So wasteful. That money could have gone to the rutiximab trial
 
Messages
15,786
As the research is being carried out by Professor of Psychiatry Peter White of the Pace trial, the interpretaion of results of which did enormous harm to people with myalgic encephalomyelitis, this research is unlikely to help us any. AfME's willingness to work with him is astounding.
It's utterly despicable. AfME is now officially an organization for the furtherance of government- and insurance-friendly propaganda. They do a horrible disservice to every patient with ME, CFS, or even chronic fatigue.
 
Messages
15,786
I wish they would look at treatments instead of why we have "pain".
Even worse, the only conclusion that Peter While will ever reach is that patients have pain only because they believe they have pain and/or they somehow benefit from having pain. He's got a long history of actively seeking results that support his psychosomatic theories, and spinning the results to marginalize ME/CFS as much as possible.
 
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peggy-sue

Senior Member
Messages
2,623
Location
Scotland
He will likely conclude that we merely have "enhanced perception" of pain, I'm fairly sure that's what the psychs said about FM...
but a waste of funding that could be spent on far better things. That's why I want to know who actually came up with the money, and if those who provided it know what it will be spent on.
Furthering the psycho's hold on us.:mad:
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Of all the things to study. Why this?

We may indeed experience fatigue (the origin of all the stupid exercise studies) and pain but I don't see how studying these two symptoms leads anywhere. They are debilitating symptoms but they are not what is making us ill.

If ME had buckets of money maybe I could be OK with this. What about working toward discovering markers, replicating promising results, large trials for diagnosing aerobic disability?

Many pain pathway studies are underway (not specific to ME) at many institutions that could be useful to this community.

And those studies are done by neurologists.

Despite protests from the ME community (the people actually suffering) why does SC persist with this misuse of funds?
 
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Cheshire

Senior Member
Messages
1,129
Even worse, the only conclusion that Peter While will ever reach is that patients have pain only because they believe they have pain and/or they somehow benefit from having pain. He's got a long history of actively seeking results that support his psychosomatic theories, and spinning the results to marginalize ME/CFS as much as possible.
[/quote]

Or use the central sensitisation model, saying overfocusing on pain amplifies pain.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820749/pdf/10067_2006_Article_433.pdf
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
It's utterly despicable. AfME is now officially an organization for the furtherance of government- and insurance-friendly propaganda. They do a horrible disservice to every patient with ME, CFS, or even chronic fatigue.
I seriously never knew that charities could be like this considering that they are funded by us but someone I know used to work for barnardos and apparently they were really nasty underneath all the life saving support they provide. They can get really really corrupt.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
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'm going to be an optimist, for once, and hope that AfME have realised the backlash created by the PACE trial, and now intend to tighten up the requirements and transparency involved in this trial. Let's face it, the money had already been allocated, and was out of their hands. They do have a chance now to earn back some respect by insisting on high scientific standards.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
I'm going to be an optimist, for once, and hope that AfME have realised the backlash created by the PACE trial, and now intend to tighten up the requirements and transparency involved in this trial. Let's face it, the money had already been allocated, and was out of their hands. They do have a chance now to earn back some respect by insisting on high scientific standards.
Wishful thinking I says. The whole premises of the trial is extremely disappointing. Everybody in the world suffers pain. 99% of medical conditions involve pain and we don't always understand why. There are often no clear signs of damage especially in a lot of neurological conditions but nobody cares why because the pain is usually managed. Any time I get pain I manage it and it's usually a short term thing but being ill isn't. And there is afme on the tv talking about doing more studies. The one thing we need is a charity or group of people that can care for us in the uk and we can't even get that right.
 

Min

Guest
Messages
1,387
Location
UK
Why on esrth is a psychiatrist running this trial anyway? Isn't it rather like a gynaecologist running a trial into diabetes?

Peter White who, along with Michael Sharpe was in Denmark yesterday at Aarhus (where Karina is being held) at the Symposium to celebrate 15 years of research about Functional Disorders at Aarhus University Hospital and to celebrate Per Fink's 60th birthday. White spoke about "Mediators of rehabilitation therapies in chronic fatigue syndrome."
 
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Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
I agree with all of you, but if I wasn't an optimist, this illness would have finished me off! Sadly, I think you are right and that reality will soon crash in, but I can hope!

I'd like to think that AfME are capable of listening and changing, although Min's footnote really does say a lot about the chances. But then, I survived since 1971 as a maths teacher, so unfounded and unrealistic optimism has to lie at my core.

However, it must be said that I am now about to sell the motorbike that has been with me since 1968, and has lain in various garages since 1972, waiting for me to have the time and energy to do it up and get it back on the road. Reality has struck!
 

jann1033

Senior Member
Messages
176
I don't even have fatigue. Never have.
My body stops working; but it's not fatigue or tiredness.
Good way to put this.I have surgery slated, after last one the nurses could not get it thru their skulls i couldn't get up. Maybe will tell them this thanks...back to topic at hand:)
 
Messages
44
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. Their donors gave freely to it and that is the money that is in the pot. I don't remember any fuss about them getting into bed with Peter White at the time when it was announced. 2. Presumably in an ideal world AfME would have preferred to take over the cash and not the project. But the fact is the project has started already and that's the deal that's on offer. The point was made several times that the new contract that is currently being negotiated will have more stringent conditions than the old one.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
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.