slysaint
Senior Member
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nope; no one there seems to have the foggiest ('scuse the pun)Perhaps there is a large debate ongoing there?
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nope; no one there seems to have the foggiest ('scuse the pun)Perhaps there is a large debate ongoing there?
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
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.
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.
Ah, shame they're deleted. Glad though they weren't of the more serious genre.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
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.
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.
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?Psychiatry needs to be there to complete the big picture yet it is just one minor aspect.
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.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.
Update to the petition:
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...
I think that means we get a bit upset after exertion"Postexertional stress"
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
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.
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.
Yes, you are absolutely right. If we're going to study the full spectrum then the full spectrum needs to be accurately represented.