MEGA research for M.E./CFS: White & Crawley listed as involved

[slysaint]

Perhaps there is a large debate ongoing there?

nope; no one there seems to have the foggiest ('scuse the pun)

 

[TiredSam]

This is not a criticism of you but could I also point out to the very tiny minority of people who have sent me what are really quite unpleasant or offensive emails over the past few days about the position I am taking that I have had this disease for over 30 years, and in a quite severe form early on following a chickenpox encephalitis

For some reason I haven't been getting updates to this thread since last Friday, so I've just caught up.

Very appreciative of everything you do @charles shepherd, I would just like to add my agreement that sending offensive emails is completely unacceptable and not something you should have to deal with.

 

[BurnA]

I know that you don't like the proposed research

But that's not an accurate reflection of what has been happening

A great deal of discussion has actually been taking place - and this has involved approaches and recruitment of a considerable number of well respected researchers/scientists involved in epigenetics, metabolomics, proteomics etc - most of whom are new to ME/CFS research (which is actually a considerable achievement!)

A residential meeting with most of those involve has been held

This is going to be the largest (in terms of money and numbers) ME/CFS research study that has ever taken place in the UK - if it goes ahead

And there is a complex and quite time consuming application process involved when it comes to the funding body that is going to be approached

I don't know if you have ever put together a complex medical research grant application involving a considerable number of researchers and research centres.

If not, I can assure you that it does take many months from start to finish.

Charles, thanks for replying - but to suggest I dont like the proposed research is not true.

I don't like the make up of the proposed team - I think that is clear from my other posts.

It isn't possible to have a well informed opinion of this study simply because we dont know enough details.


I appreciate a study of this scale takes a lot of planning, however after so much planning it's a shame it has been let down by poor communication.


If you think I was being disrespectful I wasn't, it just seems odd that after 1 year, the first communiction is a request for support without even knowing the patient selection criteria nevermind having a draft study design available.

I wonder if you are so close to the coalface, doing and seeing a lot of work, that you forget the patients are kept in the dark and only get to judge the quality of the work based on what they are told, which in this case isn't much.


Thanks again for engaging and I am extremely sorry to hear you have received those emails.

 

[Yogi]

This was posted on the MEA website.

@Simon I am very surprised and hope you can please explain further why you feel that Crawley's comment was reassuring. Thanks!

That is precisely why many do not support MEGA because of the concern it will exclude ME patients especially the severe because it relies on NHS criteria which is NICE criteria (tiredness) rather than CCC or ICC or key symptom of post exertional malaise.

The poster below makes some valid observations.

Simon McGrathOctober 3, 2016 at 5:35 pm
Thanks, Charles.

I agree this study has huge potential and it’s great to see new biomedical talent come into the mecfs field.

“the reply from Dr Esther Crawley in which she stated that patients will meet NHS diagnostic criteria for ME/CFS and will be recruited from the NHS hospital-based referral centres for people with ME/CFS” I didn’t hear that (looking forward to the conference videos being posted) but it reassures me too.

Equally, I don’t think MEGA have made a great job of communicating the study to patients, and I understand why many feel aggrieved at being asked to back a study. I like the idea of an open letter.

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• 
  GracefuldragonOctober 5, 2016 at 10:33 am
  This is not reassuring. It is ineffective science if it isn’t based on ICC on ME guidelines, because it can only be compared to other research data and used effectively if all research projects are using the same definable disease. Only recruiting from NHS clinics effectively rules out anyone who has refused GET or CBT or who has been sick long enough to have been discharged because they have finished their assigned therapies or counselling and have been discharged from their local service. By only selecting from NHS CFS service referrals, it will be excluding the most severely effected patients once again, because they will have been unable to attend those services or “treatments”. Completely aside from the fact that they are focussing on one symptom (fatigue) that isn’t even considered the cardinal symptom of ME (i.e. post exertional neuroimmune exhaustion). Bad science all around.

 

[JoanDublin]

They go straight into delete

I have, in the past, referred more serious ones to the police, especially when they involve people falsifying information (which they do occasionally do)


C

Ah, shame they're deleted. Glad though they weren't of the more serious genre.

 

[Cheshire]

Update to the petition:

https://twitter.com/i/web/status/783677775974727680

Direct link: https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18056402

Why are psychiatrists involved?

The MEGA consortium has brought together many experts from a wide range of different disciplines from across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics. Psychiatry needs to be there to complete the big picture yet it is just one minor aspect. MEGA will always be a Big Data ‘omics study, and will never be a psychiatric study.

They don't answer the question. It's not about psychiatry, it's about White and Crawley (who is not a psychiatrist!) and their BPS model, and their contempt for patients and science...

 

[Ben H]

And hovering over everything else is the spectre of the PACE trial. We, as patients, are being asked to ignore everything that has gone before in regards to research for ME in this country, while those directly involved in PACE, Peter White, and those who use the bogus results of the PACE trial to support their work, Esther Crawley et al, are allowed to sour this project by their very presence. So far, no good reason has been given for their inclusion in a biomedical research project, they are adherents to the BPS model of this disease, if they are involved then I believe we have a right to assume that they will want to fit this study into their unscientific model. They have to go.

This is my main issue (combined with criteria).


B

 

[TiredSam]

Psychiatry needs to be there to complete the big picture yet it is just one minor aspect.

That's just a non-answer. Even if there is justification for psychiatrists to be involved (and that's a big if), it shouldn't be the BPS crowd. We have been told how lucky we are to have scientific researchers coming in who are new to ME. Why doesn't that luck extend to having psychiatrists involved who are new to ME?

 

[AndyPR]

FFS!?!?!?!

Will the data be open access?

Yes. Subject to individuals’ consent, the data and the samples will be available for researchers to use. We want to rapidly increase effective research (by us, by anyone) to understand the biology, causes and different types of CFS/ME.

Anybody see the issue here???? If you don't fit the 'researcher' category then you don't get to see the data. And subject to the individuals' consent? Any decent study will have that written in right at the start.

 

[Sidereal]

Seems even worse than I feared tbh.

 

[Glycon]

Psychiatry definitely SHOULD be involved, especuially in any study using the broad criterria. Psychiatrists who may soon have to devote all their energy to legal matters - not so much.

 

[Cinders66]

Update to the petition:

https://twitter.com/i/web/status/783677775974727680

Direct link: https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18056402



They don't answer the question. It's not about psychiatry, it's about White and Crawley (who is not a psychiatrist!) and their BPS model, and their contempt for patients and science...

So we need a full set of specialisms represented, that's why psychiatrists - really? Would that apply to the omics of motor neurone or RA or just the illnessess they regard as part psychological /psychiatric?

And it's confirmed use of NICE. People are free to argue why the broadest criteria not used outside U.K. are best and I will read the arguments. For me they're problematic

1) they aren't recognised outside U.K.at a time when we should be collaborating and comparing worldwide with similar criteria
2) they were never valid in the first place. NICe wasn't asked to draw up criteria, patients with ME never accepted them and generally there's been a move to scrap the weaker criteria not use them further hasn't there?
3) post exertion fatigue, one symptom on top of fatigue e.g. Poor sleep and chronic fatigue bears no resemblance whatsoever to my M.E so it seems an unecessarily vague umbrella to say we must be part of so they can then subgroup it
4) we have seen repeatedly how these criteria have been used by Esther Crawley etc interchangeably with the casual term ME & the harm of patients with genuine ME, just as if I went around saying oh I've this terrible aura migraine but I will push bravely on as really it's a headache affects adversely the next person trying to get understanding of their genuine debilitating aura migraine.

I could go on. However There might be ultimately genuinely good reasons to do a big data study of all fatigue - and I'm a bit confused as even NICE CFS isn't the unexplained fatigue we have been hearing about - I don't know. If this was 1/10th of the uk CFS research effort it might seem fine, but will it dominate the CFS/ME effort/resources next five years?

 

[Sidereal]

"Postexertional stress"

 

[Valentijn]

"Postexertional stress"

I think that means we get a bit upset after exertion

 

[A.B.]

The evasive answers re. involvement of White and Crawley clearly suggest this project has been compromised by the Wessely school.

Did they really use the term "post-exertional stress"? If so, we're already seeing PEM redefined into something meaningless, that is easy to ignore. Exactly what the Wessely school would do.

I think we're much better off waiting a little longer for the research situation in the UK to improve. Pressure on the Wessely school will increase from two directions, namely continued bad press due to PACE, and US biomedical research making great progress both in terms of individual studies and politics at the NIH.

In a year or two the situation will look much different and maybe then biomedical research in the UK can start to take off, free from the Wessely school.

The Wessely school beliefs on ME/CFS has always been a "bubble", they are simply not based on reality. It's going to pop sooner or later and probably sooner rather than later.

 

[Sidereal]

4) we have seen repeatedly how these criteria have been used by Esther Crawley etc interchangeably with the casual term ME & the harm of patients with genuine ME

I agree. I'm surprised to see some people on this forum defending the use of a broad case definition. Science does not occur in a vacuum. We have the sociopolitical angle to consider here. We have already seen with Crawley's recent horrific mailed questionnare study that any fatigue study will be reported in the media as an ME study. She herself used the term ME on twitter where she claimed 1 in 60 teenagers have it. Based on this Q&A it looks like MEGA will be an unexplained fatigue study with a heavy focus on worthless self-report questionnaires relating to what are deemed to be psychosomatic symptoms like fatigue, aches and pains, anxiety, depression etc. But the media blitz accompanying their publications won't say "x% of tired people have anxiety/depression". It will turn into "largest ever study of ME finds high rates of depression and anxiety". The -omics sounds more like an afterthought; to be done on a subsample in case there is money. Looks like an epidemiological treasure trove for BPS researchers for years to come. Imagine all the questionnare-based publications that will come out of this.

 

[Maggie21]

This does look very dodgy and a bit of a trap set up for the patient community.

Agreed Yogi. But if we are going to be damned if we do and damned if we don't, then I for one would rather go with my gut and my conscience.

I won't sign until we have the questions we are all asking satisfactorily answered.

 

[Maggie21]

But we need a broad criteria to identify subgroups. I realise the concern with broad criteria is that it could include people who do not really have ME, but the purpose of this study is to enable us to objectively distinguish between differing groups and ultimately do away with the debate over criteria altogether.

But that is dependent on them getting a sufficiently high enough proportion of moderate/severe ICC ME and upwards in the study and not having it predominantly "tired all the time" fatigued, CFS or only mildly affected. The lower end of the scale should be the minority and act as controls and the ones to differentiate to, not those being primarily studied. Otherwise all we are doing is YET AGAIN studying fatigue and not classic ICC ME. There needs to be sufficient severely affected to provide a significant result or we are wasting yet more time and money on general fatigue.

 

[Cheesus]

But that is dependent on them getting a sufficiently high enough proportion of moderate/severe ICC ME and upwards in the study and not having it predominantly "tired all the time" fatigued, CFS or only mildly affected. The lower end of the scale should be the minority and act as controls and the ones to differentiate to, not those being primarily studied. Otherwise all we are doing is YET AGAIN studying fatigue and not classic ICC ME. There needs to be sufficient severely affected to provide a significant result or we are wasting yet more time and money on general fatigue.

Yes, you are absolutely right. If we're going to study the full spectrum then the full spectrum needs to be accurately represented. The danger here is that they will cherry pick those who are easy to reach, which could be people who are less severely affected or those who have most recently been in contact with clinics (and therefore may be early on in the course of the disease).

 

[A.B.]

Yes, you are absolutely right. If we're going to study the full spectrum then the full spectrum needs to be accurately represented.

Exactly. To study the full spectrum, it would be necessary to study everything from bedridden extremely ill from mildly ill. That means actively seeking out the severely ill, because at NHs clinics you're not going to find them.

Broad criteria don't guarantee that the full spectrum will be represented.