United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

It was theorising about 'functional neurological movement disorders' if I remember rightly. He proposed some sort of positive feedback loop that did not look to me to make sense. I am all in favour of 'systems dynamics' theories with loops and things. I made a lot of use of them myself. But they need to make sense. I was not sure about that.

 

Correct.

 

Following on from my 'digging' yesterday, with respects to the above mentioned MRC funded PEM study .. run out of steam last night, so did not post further.

Having entered the search term "Imaging the Neural Correlates of Post-Exertional Malaise in CFS/ME" in Google, taken from the transcript title of Prof. Mark Edwards talk at the 2015 CMRC, found this link to a SMCI Funded study published, “Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”

PubMed link here, and ScienceDirect link here. A search of our forum only finds two references to this paper in the "Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018" by @Alice and @MeSci, but no further discussion was forthcoming in this thread.

I for one like to hear any thoughts on the paper, by you folks who are far more qualified to comment than I am. Is it worth highlighting to Neil Harrison if passes the s4me stress test? Likewise, creating it's own thread for discussion, assuming I've not missed an existing thread?

Wishing everyone improved health and every happiness. John

ETA missing ScienceDirect link.

 

Thank you @Jonathan Edwards

 

It may be that they have to all meet CCC, but it is so easy to meet FUKUDA and REEVES that my fear is they want to prove them as valid and really, they are not. Then what could happen is they believe FUKUDA and REEVES can be used by clinicians to diagnose ME/CFS and they really can't and if they are used then again many of the wrong patients would be swept in. I also don't think the overall tests and research they are doing will end up giving us a marker. Dr. Ron Davis has research that could easily lead to a marker as does Dr. Montoya and Dr. Younger. And they came up with results in less than 2 years, maybe even 1.5 years which could easily be replicated and expanded.

FUKUDA and REEVES are for CF and putting them into practice would be a disaster.

 

Last night after Jonathan Edwards kindly replied to my question on the Harrison/PEM study, I felt initially a little reassured, but standing back and thinking about it more I still think there is much to go wrong as some of these people - even if Harrison is more nuanced and not trying to shoehorn a preconceived theory into his studies - are trying to relabel ME as a functional neurological disorder and current treatment for fnd is basically CBT and physical rehab (so a form of GET). I still will keep a close eye on this line of research.

 

As Stephen Holgate remains as CMRC Chair, it's still a possibility, will await that decision with interest.

Stephen Holgate has been very supportive of Esther Crawley's research over at least ten years I believe, and for me, his comments on the CMRC changes that action is needed now etc., ring hollow in the light of what he has said on previous occasions, including what he was quoted as saying about the current FITNET-NHS trial in November 2016 here: http://www.bbc.com/news/health-37822068

"CFS/ME is an important disabling condition.

"It has been chronically underfunded for years; patients deserve high-quality research like this."

With that link handy, also worth noting the comments by Mary-Jane Willows, former AYME CEO and staunch supporter of the SMILE trial, now Head of Children's Services since the merger of AYME with Action for ME, proactive on CMRC and represented on the Executive Board:

"It is a scandal, what other condition would you leave a child with - undiagnosed and untreated?

"And the trouble is the longer they are left, the more ill they become.

"This trial is hugely important, every day we are phoned by parents who are desperate to get treatment for their children."

And although Esther Crawley herself has left the CMRC Board, she is quoted in that article as saying something that neatly sums up the role of biology in the biopsychosocial approach:

"A teenager might say, 'You are just trying to change my sleep', but do you know how much biology you actually change?

"Children who come to my clinic have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible; by changing their sleep, we reverse that.

"The stuff we are doing is not a pill, but it might as well be."

 

I agree. If he's selling out already to build up his profile, it doesn't inspire me with confidence. His co-author published this junk today: https://www.nationalelfservice.net/...al-neurological-disorder-conversion-disorder/

All the best intentions in the world mean nothing if his final paper ends up labelling ME a FND, and providing the basis for NICE, and then the NHS, to do the same.

Spineless people who prop up bad science are as bad as those who peddle it in the first place. I'm more convinced than ever that this guy will prove bad news for us, regardless of what he believes or intends.

Remember, too, that we've been here before: Ramsay let McEvedy and Beard read his notes, giving them the benefit of the doubt, and they screwed him over with their paper on hysteria instead. Can we really take that chance again, no matter how young or nuanced or promising he seems?

The title of his paper is clear. It'll be written with someone who firmly believes in conversion disorders and thinks ME is one.

I doubt he'll have the influence as a new researcher to prevent that paper becoming a rallying call for a new breed of BPS practitioner that sees ME as 'functional', meaning 'hysterical' but with more jargon.

If this isn't challenged now, it'll become that much harder after publication. And I think NICE is likely to give this paper more weight than any number by Kindleton or Geraghty. Large, MRC-funded studies impress the establishment, and NICE defers to authority every time, whether it's scientific or not.

 

I feel the same. I first heard of Neil Harrison as a speaker at the IiME Research Conference in 2015, enjoyed his presentation on the conference DVD, was pleased to know of his interest and involvement in ME research and have no doubts about his sincerity and good intentions.

I also don't object to researchers trying to prove or disprove their functional neurological disorders hypothesis in ME or CFS, provided that selection criteria are clear and methodology above board etc., but the phrasing in the overview of the study that you linked to concerns me.

"We have previously developed a theory that we believe provides a reasonable mechanism for how symptoms are produced. We have already gathered evidence that supports this theory in patients who have functional symptoms affecting movement (e.g. weakness, tremor) and sensation (e.g. numbness). We now want to move forward and test if this theory can also account for symptoms experienced by people with chronic fatigue syndrome and non-epileptic attack disorder." http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1

I also noticed that at end of the second of these two interesting interviews kindly given by Neil Harrison in 2016, he mentions the work of a researcher in Australia, Andrew Lloyd, whose research activities look impressive to me, but then ends with this:

"He has recently completed the Cancer Australia-funded Treatment of Post-cancer fatigue Study (TOPS) trial, which demonstrated the effectiveness of cognitive-behavioural therapy and graded exercise therapy in the management of post-cancer fatigue. In the UNSW Fatigue Clinic he leads a multi-disciplinary research team conducting both pathophysiological research to better understand disease menchanims in medicallyt-unexplained fatigue states, and also clinical research to improve existing cognitive-behavioural therapoy (CBT) and graded exericse therapy (GET) treatment interventions." (ETA the correct link: https://research.unsw.edu.au/people/professor-andrew-lloyd)

As I said, I find Neil Harrison personable and interesting to listen to, and do not doubt his good intentions, I just think it makes sense to be alert to the possible disadvantageous outcomes of well-meaning biomedical research activities until we have better tools for differential diagnosis of ME.

https://www.youtube.com/watch?v=g7TDSNejoEk

https://www.youtube.com/watch?v=hlR0J3rJdfs

 

Those quotes just sent a chill down my spine. I feel like that game-keeper in Jurassic Park when he realises he's been lured into a trap, and says, 'Clever girl!'

This is a very clever man indeed.

 

Really the charities involved could do us all a favour and do a Q & A on the FND study and the researchers. We have concerns eg around their supposed treatment part, why they are using the terms FNS or FND when the MEA themselves are campaigning against this classification and terminology and what criteria etc (unless that's already been said). MRC is only funding one study currently so having more info wouldn't go amiss. There's connection with the FND brigade and the CBT approach as treatment eg Jon stone wrote with trudie Chalder et aL in defence of CBT get for CFS recently so that's a concern.

Regarding the MEGA PAG to be transferred across to the CMRC I wouldn't necessarily accept they reflect the voices on here about things, just thinking MEGA was a good way to go and Crawley fine to head it puts them on the AFME approach side of things. But I suppose that's the way it goes. They need positive support which people like me can't give because I've been just too harmed and admittedly embittered by their lack of progress

 

The fundamental confusion always made between ME/CFS and CF, is that for ME the energy deficit and abysmal recovery is not a secondary consequence of some other condition, but is instead a primary symptom of a disease that cripples the body's energy conversion and management mechanisms. The symptoms directly reflect the disease itself. So treatments designed to rehabilitate people whose energy conversion/management systems are still intact is OK ... if applied to people whose energy conversion/management systems are still intact. But apply them to people whose energy conversion/management systems are totally screwed, then you might as well prescribe them Russian roulette.

 

Just found this job advert:
"
Lecturer in Primary Care Research ACAD103187

Bristol Medical School (PHS)

£42,418 - £47,722 pro rata per annum

This is a fantastic opportunity for a methodologist/researcher with strong qualitative skills, who has a track record of high quality research in the field of primary care or health services research, to join one of the UK’s leading departments for research in population health sciences – the Department of Population Health Sciences, University of Bristol Medical School. The post holder will be a member of the Department’s Centre of Academic Primary Care (CAPC), as their main responsibility will be to undertake research on topics relating to primary health care, both in terms of leading on their own projects and contributing to studies led by others. The post-holder will also contribute to teaching and administration for the Bristol Medical School’s undergraduate and postgraduate programmes.

The successful applicant will have a Ph.D. in a qualitative topic (or equivalent research experience) and have published in high impact journals. They will be able to demonstrate their enthusiasm for making a significant and effective contribution to the teaching and organisation of undergraduate and postgraduate teaching programmes. They will be able to demonstrate their abilities in research administration, and in the successful supervision of junior staff.

The post is available on a part-time basis (0.4 of full time equivalent)."

https://jobs.theguardian.com/job/6682994/lecturer-in-primary-care-research-/

 

My cautious optimism is more than cautious now, but I can’t think of the word.

I am disappointed to learn of the FND stuff that Neil Harrison is undertaking.

I’ve had ME 12 years now. I held onto hope that I’d see solid biomedical research, subsequent diagnostic tests and pharmaceutical treatment (hopefully cure). Once again my hope lies with other researchers.

I find my initial optimism fading, unless the CMRC act on some/all of the suggestions that forum members have made in order to gain some trust.

 

Yes, and I find it tedious that the stock response to concerns about CBT and GET as treatments for ME/CFS is that these are used for cancer and other chronic diseases so their use doesn't imply that ME/CFS isn't taken seriously or is psychological. That said, I have doubts about the claims for effectiveness in post-cancer chronic fatigue, but I'm not capable of checking on the studies purporting to provide evidence for those claims.

 

I'm honestly not sure if it's some of the biomedical researchers, like Neil Harrison, who are lured into the biopsychosocial trap, rather than that they don't have good intentions towards the patients whom they genuinely believe may or do have a functional disorder.

This is my primary objection to the CMRC from the outset, when they formed in 2013, as I could envisage well-meaning, unwary biomedical researchers being drawn into the field only to be utilised to progress the biopsychosocial movement, which goes way beyond ME/CFS as we know.

 

@Jo Best, can you clarify this please, as am a bit confused about what you are trying to say here. If someone like Harrison from the outset is approaching ME as a functional disorder then how can he be lured into the bps trap, as a functional disorder is part of the bps model? I could be misunderstanding you. Thank you.

 

Sorry @anniekim, my comment is garbled, what I'm trying to say is that I haven't looked into whether Neil Harrison had a preconceived idea that ME may be a functional disorder before he got involved in researching it via CMRC (maybe others have evidence of that) but then again, re-reading Jonathan Edwards comment below, I'm not so sure again, maybe that's where the grant money was (probably easiest if I ask him!)

My other point though, is that I don't think that all research into functional disorders is BPS-led and I'm certain there are researchers and clinicians genuinely sympathetic to patients diagnosed with functional disorders and wanting to help them.

I don't believe for a second that ME is a functional disorder so I think that time and money spent on studies to test this hypothesis is wasted.

 

Thanks @Jo Best for the clarification, understand now

One more thing, you write:

‘I don't believe for a second that ME is a functional disorder so I think that time and money spent on studies to test this hypothesis is wasted.‘

I agree with you on both counts. Yet earlier in the thread you said you didn’t mind them testing the hypothesis CFS is a FND if methodology is good and selection criteria transparent, which seems contradictory to what you are saying here in your last post. Or are you separating CFS out from ME in your statement, or just as your thinking has developed on this issue, even though you don’t object in theory you still think, as I do, it’s a waste of money and time spent on this hypothesis that ME is a FND as ME clearly isn’t a FND? Thanks, sorry for all the questions.