Petition: Opposing MEGA

[BurnA]

Surely the primary objection, which I fully agree with, is to not include any individuals who are known to have engaged in corrupt practices; those involved with PACE inevitably fall into this category. The issue should not be about excluding certain clinical disciplines.

I agree and unless I have missed something I think this is in line with what most if not all OMEGAs are saying.

 

[Barry53]

I agree and unless I have missed something I think this is in line with what most if not all OMEGAs are saying.

I concede some confusion.

Thus in signing this petition we reject calls from the ME/CFS Epidemiology and Genomics Alliance to create any proposal for a ‘big data’ study, or any study of any description, regarding it as inevitably and irrevocably tainted.

Two questions re this:-

1. Is MEGA being rejected because it is believed White, Crawley, etc are inextricably linked with it? That you cannot have MEGA without them? If that is true then I can understand that rejection; if false then I'm not so sure.
2. Why is big data being singled out as a key objection here? It seems like a curve ball? It is a technology area for making sense of large sets of otherwise confusing data, and might well assist in many areas of science. If it is believed the term "big data" is being misrepresented and abused in promoting MEGA, then that should be made clear as the objection. But to blindly reject science simply because it utilises big data techniques, would be to obstruct a great many scientific discoveries, and would set a dangerous precedent. Just saying "any study of any description" would be enough and covers all the bases, without sounding biased and uninformed.

There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives.

I agree with this, provided there is no hidden text here. I was a bit worried the inference might come across as "genuine opportunities for ... only biomedical researchers to get involved ...". But maybe that is just me.

 

[JoanDublin]

This comment from Katie Ash on the OMEGA petition says it all:

I desperately want good researchers to carry out some research on ME, of course I do, and I thank those that want to help us, and say to them please continue to try, but I cannot support anything that involves people involved in the PACE trial, who control the media and slander the patient community in national press again and again, and I am also disappointed that the research collaborative use Action for ME as their link to the patient community. I do not trust that they have our best interests at heart, with their history of supporting and not speaking against these psychiatrists and the BPS model.

To those genuine and good researchers, please stand up for us, and for good quality research that you can be proud of. Speak out publicly about the injustices and the malpractice. Become our ally truly,. The UK will be looked down on as lagging behind with these compromised studies. Shake off the old order and start afresh, and maybe we can really make some progress. We cannot waste any more time or lives. And please stop patronising us with gimmicky petitions, we have brains and we have had enough of being toyed with. It breaks my heart to say no to research that could have some very positive results, but for me the team needs to be redesigned and this needs to be done properly. Study the very severe, follow the leads of previous research, link in with other work internationally, sort out the diagnostic criteria to allow this. Give us some hope that you are in this for the right reasons and that future generations won't suffer like we have. Thank you.

https://www.change.org/p/opposing-m...tm_medium=facebook&utm_campaign=facebook_link

 

[trishrhymes]

Heartfelt and clear. Thank you. I wonder whether the scientists in the MEGA group are aware of the counter petition and the comments that go with it.

 

[char47]

We really must not conflate the two separate issues of corrupt individuals, versus a clinical discipline those corrupt individuals have brought into disrepute. Insisting on excluding corrupt individuals is absolutely right and wholly justifiable, from any reasonable person's standpoint. Insisting on excluding a medical discipline en masse, just gives the impression to others we want to skew the results in favour of a biomedical result. Actually a biomedical outcome would carry far more weight if a psychiatric specialist was on the team ... but ONLY if that person is of the highest integrity, the same as all the other researchers need to be.

I couldn't agree more Barry.

while i agree with everything OMEGA says, there is a real danger if it being 'spun' to give more ammunition to the CBT fan club that 'patients' are not sensible/dont understand, are attcking those who are trying to help them & therefore should not be listened to, etc etc etc & also the whole 'poor me'/'playing the victim' crap - twisting genuine appropriate critisism so it looks like personal attacks. I hope i'm wrong, but i worry

 

[Cheesus]

Actually a biomedical outcome would carry far more weight if a psychiatric specialist was on the team ... but ONLY if that person is of the highest integrity, the same as all the other researchers need to be.

Why is that?

 

[Barry53]

Why is that?

Because no one could then argue the result was skewed towards biomedical, due to other disciplines being deliberately excluded.

 

[JoanDublin]

I couldn't agree more Barry.

while i agree with everything OMEGA says, there is a real danger if it being 'spun' to give more ammunition to the CBT fan club that 'patients' are not sensible/dont understand, are attcking those who are trying to help them & therefore should not be listened to, etc etc etc & also the whole 'poor me'/'playing the victim' crap - twisting genuine appropriate critisism so it looks like personal attacks. I hope i'm wrong, but i worry

In the words of Jonathan Edwards: 'we are past that now'. Let's not get sucked into any more self oppression. The arguments in the petition are clear, concise and very pertinent. The comments from patients on the actual petition just blow my mind. What an amazing bunch of rational, intelligent, considerate people we are.

 

[JoanDublin]

Because no one could then argue the result was skewed towards biomedical, due to other disciplines being deliberately excluded.

Skewed towards biomedical? First time I've heard that argument

 

[AndyPR]

I see absolutely no reason for a psychiatric specialist to be involved. Do studies on the biological basis for cancer have to include a psychiatric specialist in order to avoid the charge of 'biomedical bias'?

 

[Wildcat]

.
AndyPR wrote:.. "I see absolutely no reason for a psychiatric specialist to be involved. Do studies on the biological basis for cancer have to include a psychiatric specialist in order to avoid the charge of 'biomedical bias'?"
.

I agree. We are way beyond being cowed and silenced by fear of the undermining psychosocial spin which portrays ME patients as stupid and prejudiced.
.

 

[Jo Best]

The OMEGA petition doesn't specify Psychiatry as far as I can see? Mady Hornig is a psychiatrist doing biomedical ME/CFS research and there are other psychiatrists and psychologists having made or making a valuable contribution to ME/CFS, including Leonard Jason whose team has done recent work on criteria. A stated aim of the MEGA study is to compare sub-types with various diagnostic criteria but that will be an academic exercise by the time is data is evaluated.

Edited to clarify that I mean the OMEGA petition - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Cheesus]

Because no one could then argue the result was skewed towards biomedical, due to other disciplines being deliberately excluded.

That isn't something research scientists typically have to do. Objective evidence is objective evidence. It really doesn't matter what the discipline of the researcher is. The research should be capable rebuffing criticism because of the merits of its content, not the qualifications of its authors.

 

[Barry53]

That isn't something research scientists typically have to do. Objective evidence is objective evidence. It really doesn't matter what the discipline of the researcher is. The research should be capable rebuffing criticism because of the merits of its content, not the qualifications of its authors.

Please do not misunderstand. I am not advocating psychiatry must be involved; I am not saying that at all. I was simply concerned in case some were insisting it must not be involved, no matter what, when the problem is not psychiatry per se, but some corrupt individuals who happen to be psychiatrists. I agree entirely with what you say.

I suppose I was thinking that the likes of White/Crawley, NICE, etc. would find it much more difficult to rebut findings of a team that included people with psychiatric qualifications.

I agree that objective evidence is objective evidence. Unfortunately the people that have to be convinced are not themselves very objective, and seem not to respect or recognise objectivity.

 

[Barry53]

Who is the principal investigator of the study? If it hasn't been decided yet that's fine but if it has and it's Crawley then that should have been communicated to the patients when their signatures/support was solicited.

I agree, but need to beware that a deceitful strategy can sometimes be to deliberately delay such decisions, in order to play for time. Even if the decision has not been made, the full list of candidates must at least be known, and could be made available to us.

 

[Barry53]

I just don't understand the point of this Omega petition at all. I feel it is so unfair to people with M.E. to be trying to block research like Mega for no reason without giving it a chance to even articulate what it is about. Even if researchers like Profs White and Crawley were involved it would still be biomedical research and they might actually have worthwhile contributions to make having worked extensively with M.E. patients. Metabolomics, genomics etc. experts will all be reporting based on what they find in their research irrespective of the views of who else is involved in the overall research.

I can understand (and sense) your despair here, but the trouble is that any research worth a light absolutely has to be high calibre, and of the highest integrity. If you include people whose track record shows them to be corrupt, self-serving, manipulative and powerful individuals, the resulting 'science' is not then science at all. At best it will be worthless, at worst it will be immensely damaging; PACE (thanks to White, Crawly, et al) is the latter. It is hard to imagine that anything else they get involved in will not be just the same; worryingly they may have learned from PACE, and try harder in future to fly under the radar more successfully.

So although I think I agree (still trying to understand all the issues) with MEGA in principle, some of the key players involved trigger enormous red flags. Like discovering a study into geriatric care had Harold Shipman in a key role; it is about track record (and bear in mind the PACE individuals have had a life-destroying impact on many more people).

 

[Jo Best]

May I just share here an example pointed out to me today of the BPS model fitting the 'bio' into the 'psycho-social'. This study doesn't include anyone involved with MEGA but with PACE (Trudie Chalder), it's just an example.

Psychol Med. 2008 Jul;38(7):941-51. doi: 10.1017/S0033291708003450. Epub 2008 Apr 30.
The neural correlates of fatigue: an exploratory imaginal fatigue provocation study in chronic fatigue syndrome.
Caseras X1, Mataix-Cols D, Rimes KA, Giampietro V, Brammer M, Zelaya F, Chalder T, Godfrey E.
Author information

Abstract
BACKGROUND:
Fatigue is the central symptom in chronic fatigue syndrome (CFS) and yet very little is known about its neural correlates. The aim of this study was to explore the functional brain response, using functional magnetic resonance imaging (fMRI), to the imaginal experience of fatigue in CFS patients and controls.

METHOD:
We compared the blood oxygen level dependent (BOLD) responses of 12 CFS patients and 11 healthy controls to a novel fatigue provocation procedure designed to mimic real-life situations. A non-fatiguing anxiety-provoking condition was also included to control for the non-specific effects of negative affect.

RESULTS:
During the provocation of fatigue, CFS patients reported feelings of both fatigue and anxiety and, compared to controls, they showed increased activation in the occipito-parietal cortex, posterior cingulate gyrus and parahippocampal gyrus, and decreased activation in dorsolateral and dorsomedial prefrontal cortices. The reverse pattern of findings was observed during the anxiety-provoking scenarios.

CONCLUSIONS:
The results may suggest that, in CFS patients, the provocation of fatigue is associated with exaggerated emotional responses that patients may have difficulty suppressing. These findings are discussed in relation to the cognitive-behavioural model of CFS.

DOI:
10.1017/S0033291708003450 [PubMed - indexed for MEDLINE]

 

[Wildcat]

.
The study in the last post is an excellent example of how bio-studies can be (and are) subverted and spun to support the (now redundant) psycho-social theories of ME .....

....."The results may suggest that, in CFS patients, the provocation of fatigue is associated with exaggerated emotional responses that patients may have difficulty suppressing. These findings are discussed in relation to the cognitive-behavioural model of CFS."
.

 

[A.B.]

I feel it is so unfair to people with M.E. to be trying to block research like Mega for no reason without giving it a chance to even articulate what it is about.

We are not trying to block it for "no reason". The reasons have been explained repeatedly in various posts.

It is true we don't know much about the project. It is MEGA that decided to seek patient support without adequately informing us about important details. One can interpret this in different ways:

a) The MEGA team has no actual interest in engaging with patients, viewing us as tools to be used to get funding.
b) The MEGA project is poorly organized and they don't actually have a plan.
c) They have a plan, but patients would not like it, so they are selectively showing us those parts of the plan patients are likely to approve of.

All three of these are problematic. Considering this would be one of the biggest and most expensive studies on the illness ever done, I think it is entirely appropriate to hold this project to high standards.

Even if researchers like Profs White and Crawley were involved it would still be biomedical research and they might actually have worthwhile contributions to make having worked extensively with M.E. patients. Metabolomics, genomics etc. experts will all be reporting based on what they find in their research irrespective of the views of who else is involved in the overall research.

White and Crawley have consistently produced bad research. White has engaged in fraud to cover up that CBT and GET don't actually work as well as claimed (even by their own low standards). They might have contact with patients but they are clearly out of touch with the illness given patient reactions to the BPS model of the illness.

As ME/CFS experts in MEGA, they could do considerable damage to the study in various ways. For example they could redefine PEM so that it better fits into a psychosocial illness framework, making it impossible to determine which patients actually had PEM and which ones had, for example, health anxiety. It would mean losing the ability to link biological abnormalities to a key symptom. Even a single error of this kind would significanty reduce the value of the study. In the MEGA petition, PEM is referred to as "post-exertional stress", which sounds like it could mean health anxiety after exertion. I see no reason to believe that the biomedical experts on the team have anything but the best intentions, but they could lack the knowledge to object to these kinds of errors.

We have not been told what White and Crawley will actually be doing which is worrying. The MEGA team has given an vague answer on why "psychiatrists" are involved which has only increased my suspicion.

We patients are in a difficult situation, but we must not let desperation affect judgment. There are significant problems with this project, and it's not MEGA or nothing. If we don't stand up for good research we won't get it.

 

[slysaint]

Even a single error of this kind would significanty reduce the value of the study

It could also potentially have even wider implications for any illness that has 'chronic fatigue' as a symptom. It's already happening in the NHS. And when you have people like Crawley saying that 'CFS is very common' it belittles it still further.