Professor Stephen Holgate has said that the researchers developing the “Grand Challenge” research project on the biological mechanisms of ME/CFS are “the best in the UK — the very best — and it’s what we call a ‘dream team’.”
Professor Holgate was speaking at the livestreamed annual general meeting of the UK CFS/ME Research Collaborative (CMRC) on 27 April. He said that the Collaborative had attracted new researchers to the field and to the Grand Challenge, whose expertise ranged from arthritis, to information technology, to molecular genetics.
He explained that the research team would submit a grant towards the end of the year for the collection of blood and urine samples. This resource, if funded, would then be accessible worldwide.
The National Health Service (NHS), with the British Association of CFS/ME — whose members mostly work in specialist NHS ME/CFS clinics — would work with the researchers to recruit patients in NHS clinics across the country, Professor Holgate said.
He added that the recruitment phase would take “a couple of years” and would require the active participation of patients. A blog would be started over the next few months to attract patients’ interest, with scientists on the project explaining in lay terms what they were planning to do.
The project will be, Professor Holgate said, “a world first”, involving “some of the best researchers in the country” and the enthusiasm generated would be “enormous”.
ME/CFS is, he said, no longer viewed as a single disease-entity. The scientists plan to “use the modern ways of interrogating complex datasets” to help cut ME/CFS into subtypes, each of which might have different causative pathways and require different treatments.
Moving on to other matters, Professor Holgate confirmed that the next CMRC conference would be held in Newcastle on 28 and 29 September, and that a “very exciting” provisional programme had already been drawn up. Three workshops for patients are planned: one on participation in clinical trials, one on severe ME/CFS, and the third on POTS (postural orthostatic tachycardia syndrome, a form of orthostatic intolerance common in ME/CFS).
The conference will, he said, also include reports on completed projects that had been funded by the Medical Research Council; an update on the Grand Challenge; and a focus on the care of children with ME/CFS.
Continuing the meeting, Professor Holgate said that an industry member would be sought to join the board to help make contact with drug discovery opportunities that might arise from research.
Sonya Chowdhury of Action for ME noted that questions had been raised about a statement in the CMRC charter which states: “Members must… Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.” Ms Chowdhury said that the CMRC did not exist to “stifle scientific debate” and that a redraft would be made for clarification and circulated to board members for approval.
The statement has provoked anger among patients since the CMRC’s inception because it echoes language used by the PACE trial researchers in response to criticism of the study and is widely seen as attacking the right to criticise poor science. Professor Peter White, one of PACE’s principal investigators, was a member of the CMRC board when the charter was drawn up, but has since resigned. Professor James Coyne has said of the clause, “I’m not a lawyer, but I am a staunch advocate of academic and intellectual freedom and can recognize a threat when I see it.”
The CMRC was set up in 2013 to provide a mechanism for ME/CFS charities, researchers and clinicians to work together, especially to attract new funding to the field. The organisation’s launch proved controversial because the Collaborative included not only biomedical scientists but members of the biopsychosocial school of psychiatry responsible for studies such as the PACE trial.
The biomedical focus of the Grand Challenge, and the largely biomedical emphasis of the conferences has been encouraging to patients, but concerns remain over the influence of biopsychosocial protagonists in the organisation.
The meeting took place in London and was also attended by Dr Esther Crawley, Professor Hugh Perry, Jan McKendrick of ME Research UK, and Ed Sykes of the Science Media Centre.
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November 18, 2024
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Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes for patient advocacy. Even in this evolving environment, we’re excited to share some positive news: #MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by
20 thoughts on “Professor Stephen Holgate: UK has “dream team” for Grand Challenge”
If diagnostic criteria that select people with ME/CFS are used such as the Canadian consensus criteria that are used by biomedical researchers this will be good.
If overly inclusive criteria are used such as the Oxford or similar and/or if fatigue is the basis of patient selection, this will be another waste of UK taxpayers money and another layer of junk science.
Studies that mix people just suffering with fatigue from those with ME/CFS are meaningless.
It makes no sense to add patients with the neurological disease ME/CFS and post exertional exacerbation of symptoms, to a group of patients with other fatigue disorders . To study this mixed bag and then say that the results apply to people with ME/CFS- especially if the disease has not been diagnosed.
The diseases are different and as rhe bio researchers attest the only way to solve the ME/CFS puzzle is to study the disease ME/CFS.
Proponents of rhe biopyschosocial model for ME/CFS – cling to their model by selecting broad groups of fatigue patients. They appear to be suffering from cognitive dissonance and are unable to let go of what appears to be their own delusional illness beliefs.
There are millions of people with ME/CFS in the UK so it beggars belief that it will take 2 years to find patients.
It would seem to be even more important to include that members of the research collaborative should not take part in orchestrated campaigns against specialist medical advisors of charities, when involved in carrying out their job of supporting, defending and protecting patients who are suffering at the hands of misinformed professionals.
Hi Meaction, can you tell me who told you that that the CFS collaborative that is featured in your above article is the Anti Christ of UK ME/CFS research and misinformation.
We in the ME Alliance have spent the last five years trying stop these people from dominating UK ME research.
They were set up by Simon Wessely. They are funded by the UK govt who only recognise CFS. Their members include Action fir ME, ME Association (the ME Opathy charity) AYME, MERUK who only do fatigue research. They had Peter White as a member until recently and Esther Crawley, who is 2nd in command and I assume you know is now involved in taking Dr Speight to a GMC disiplinary case.
There is so much wrong with the CFS collaborative, I could go on all day. But I appeal with you to take this post down and not repeat anymore propaganda about this disreputable organisation.
Michael Evidon ME Alliance
Michael,
Our writer here is anonymous; that was the writer’s choice.
Regarding moderation of comments, like all internet sites, we receive more spam than comments! If comments did not go into automatic moderation, the comments on this article would have included numerous pornography recommendations and an ‘herbal cure’ for HIV!
I also understand your view on the CFS collaborative, and thank you for sharing your voice with us.
Jaime
I agree. The “research” they do will be manipulated by the Psych Lobby. No one doing real research should be involved with this collaborative.
I also agree that #MEAction should not post articles about this manipulative group. There should be a well written challenging article to just who these “researchers” are, the criteria that needs to be used and what needs to be studied. The British use double speak and sit on the fence so that they can just ride waves and always be right.
No more reporting on this so called ME/CFS Collaborative!
“There should be a well written challenging article to just who these “researchers” are, the criteria that needs to be used and what needs to be studied.”
We have solicited one, but the potential author in question will have to see if that’s something he wants to pursue.
“No more reporting on…”
I think it’s important that we know who is doing research on ME/CFS.
I have to agree with Michael Evison. The same collaborative he mentions are responsible for the death of many PWME. They Are also shaking hands with Per Fink in Denmark who is responsible for Karina. Karina now has non reversible Brain Damage due to enforced Graded Exercise Therapy and refusing any contact with her family. She has been stripped of all of her ju man rights. This is after she was forcibly removed from her home over 3 yrs ago.
To classify (ME) Myalgic Encephalomyelitis as the same as (CFS) Chronic Fatigue Syndrome is the biggest mistake in the history of this disease. The collaborative can’t possibly help PWME unless their researchers are ready to accept that ME is a debilitating disease and not a figment of our imagination. They also need to publish their scientific research in transparent journals allowing for review by other researchers so all can learn. It’s time to seperate ME from CFS and show some compassion for what we have to endure every single minute of our lives.
Like another commenter, I am concerned that it will take 2 years to select patients, sounds like cherry picking. I feel that it is shameful that M.E Action would have anything to do with an organisation that uses CFS in its title and that includes Esther Crawley.
It makes me wonder where M.E Action’s loyalties lie.
They should be to M.E patients.
I do think it is very important for the credibility of #MEAction that material that appears under the #MEAction logo either contains an author or source, or alternatively is vetted for its benefit to people with ME. Without an author/source and with #MEAction branding, the implication is that #MEAction endorses this information.
#MEAction and many of its members have fought hard against the psychosocial model of ME and for increased funding for biomedical research. This article appears to be inviting patients to support not only a research project apparently led by the UK psychosocial proponents, but also a project that is aiming to procure funding that could be spent on explicitly biomedical research.
“I do think it is very important for the credibility of #MEAction that material that appears under the #MEAction logo either contains an author or source.”
Some authors prefer to remain anonymous, and as editor, I respect their decision to do so. It’s labeled as being written by ‘Anonymous’, however, to avoid any confusion.
I can’t endorse the procedure or policy which allows for anonymous comments or postings. If you can’t own up to your own post then it shouldn’t be posted. Hundreds of trolls out there working against us and they are usually healthy which undermines the health of our dedicated advocates.
Wendy, I know this poster personally; they are not a healthy troll, but a volunteer author with frequent contributions to #MEAction, all well-received (except for this one). We as a community are asking everyone to take on a pseud from now on to avoid any future misunderstandings, and to ensure that personal viewpoints aren’t perceived as #MEAction’s as a whole.
As far as making their real name public, we all know the stigma associated with the illness. If this author — or anyone else — chooses not to use their real name, I absolutely would understand why not.
I had no idea that this was posted by the Demi Gods of PACE.
Once again I ask why MEAction has allowed this posting to be changed without vetting. At first it was anonymous and we expressed our views that if the author can’t sign his/ her name then it should not be posted. The content of the first draft hinted at a psycho babble origin but this new draft is screaming Demi God all the way.
I especially love the vexatious way that the words of “harassment, anger and orchestrated campaigns towards those conducting peer reviewed research”have been inserted.
I continue to shake my head and brush the lack of respect, empathy & compassion off my shoulders while I look for ways to support those who have been locked inside their bedridden bodies for decades. A world of tube feeding, diapers, darkness and days when even the slightest caress of a gentle summer breeze across the skin is so painful the severe patient would cry for relief. We don’t know if they are crying because their can no longer produce tears but we can see it on their faces.
To those research scientists who are in the cause because they genuinely want to help – we thank you from the bottom of our hearts. That’s approx 20 million thank you’d. To the collaborative who convene the round table of the dream team – I hope you save your soul in time because at some point you are going to be very sick, or in an accident leaving your body so full of pain you will look for ways to commit suicide. One of you might go to bed seemingly healthy and wake up the next morning sick with ME. You will be wishing you had researched properly when you had the chance.
Wendy – at this point I find these comments very destructive. Consider that the person who wrote this piece is ill and that comments accusing her of working to undermine her own life, health, future are probably distressing. Considering that I am severely ill and after dealing with the fallout of this piece, am deeply, deeply crashed and will probably not be able to make three very important meetings scheduled today, all pertaining to advancing science and awareness for ME. Consider that all of our staff are ill. Consider all of the work we have done over the last many months to deconstruct PACE and read this post within that broader context.
We are working on writing a response post that covers our editorial policy (or lack thereof to date) and how that is going to change. It will take Jaime a few more minutes to get that up. Please bear with us.
Please also note this author’s *extensive* history of writing critical analysis of the PACE trial. http://meaction.net/user/alexa/?profiletab=posts (make sure to hit “load more” at the bottom of the first page) Yes, she is a demigod!
“harassment, anger and orchestrated campaigns towards those conducting peer reviewed research” is *quoting* the CMRC. If you read more carefully, that phrase was included article for the purpose of critiquing it.
Well said, Jen. Look after yourself, Alex too.
The amount of energy some people spend apparently attacking others without seeming to have read their posts is worrying. I fail to see how any of Alex’s posts can be construed as “Pro-PACE”.
Regarding the Collaborative generally – huge issues of trust remain, understandably (Science Media Centre, Esther- Lightning- Process- Crawley) . However, many of us very long term sufferers from ME in the UK are relieved to see any biomed research going ahead. Surely, a conference at which Prof Montoya spoke last year, is doing something right?
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/
I also think at this point, Wendy, once you’ve read Alex’s history of contributions (http://meaction.net/user/alexa/?profiletab=posts), that you engage directly with her on this thread regarding your concerns about her positions on PACE. I am American as is Jaime and so it might be more fruitful to engage directly with a British patient about her coverage of CMRC and PACE.
I’m a Canadian who admin’s on a group of UK pages dedicated to support & advocacy. I no longer feel comfortable with MEAction. We practice transparency because the UK is still stuck in the dark ages for those with ME. What I see here is the acceptance by quantity of contributions rather than quality as far as transparency is concerned. These types of contributions reek of the UK collaborative and we are on opposite sides of the room. We refuse to compromise our integrity.
Attacking the writer of this piece by bandying about allegations of trolling is shameful ignorance.
Like Jen and Jaime, I personally know the author. Without going into details, I can tell you that she has severe ME, yet has given her writing talents to a number of significant and successful initiatives over the last few years, both on her own and as a team member. I guarantee you that you will have applauded what she has done and perhaps even shown your support in various ways.
If you read some of the other pieces she’s written for #MEAction, you’ll see that she tends to report factually. This piece, likewise, is simply an accurate summary of what Stephen Holgate and Sonya Chowdhury said at the CMRC AGM. If it comes across as cheerleading, it’s because this is Holgate’s own style, not because she is a cheerleader for the CMRC.
Knowing all that I do about the author of this piece and how much she has contributed to our community, it’s been upsetting enough for me to read some of the comments here. I can only imagine how she must feel.
Believe me, she would never be so ill-mannered and cruel to attack someone personally in the manner that she has been attacked.
Please stick to content and don’t shoot the messenger.
Thank you for writing the article. In response to those criticizing it, I understand the anger at CMRC but think it is misdirected at the author. I like to know what is going on, even if the news is bad or is about collaborations that have done harm in the past (and possibly future)!
I am just grateful for the article for keeping us up-to-date.
Whilst there are issues around Esther Crawley (eg Lightning Process “research”) do look at the rest of the line-up of researchers presenting their work at 2015 collaborative – they are all biomedical researchers, not psychiatrists. And remember the excellent Prof Montoya was there.
http://www.meassociation.org.uk/2015/10/mecfs-research-all-heads-turn-towards-newcastle-next-week-9-october-2015/
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