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

user9876

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In terms of the criteria one of the participants of Mega tweeted this


Which would be broad but certainly not Oxford criteria. If anything more like the IoM criteria.

In general terms I think this is a project worth supporting. It has some good people involved who haven't been involved with ME before. I think they will want it to be successful and won't want to let White and Crawley's bad science scupper their work.

I think that this will be as good as it gets in terms of funding in the UK

It would be good to see more details both of what they plan to do and how they intend to get patient participation.
 

Cinders66

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They have just had a question on why the patient pledge petition is wanted at the CMRC conference. I will leave it to someone with more recall to explain, I'm still unconvinced. The whole we need patient opinion voice, hasn't influenced MRC past 20 years or establishment attitude to the PACe trial. We usually just hear contempt for we who follow the field and contribute on forums as "a small, vocal, unrepresentative and hostile minority".

I think patients deserve more information for something is put out like this, we are interested parties not just a herd of cheerleaders. I might sign it in the end but I might not, if I don't it will in part be because of my general frustration with the uk approach to patients, research. Funding etc which I just don't really endorse. Hearing Hugh parry I think blame patients harassment for lack of interest in the field just sums up how the establishment has treated us and yet fails to recognise & address its own failures sufficiently.
 
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snowathlete

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https://www.actionforme.org.uk/uploads/MEGA - Progress update circulated 16.5.16.pdf

Apologies. Term " observer" not used here but distinction made between White, Crawley, Collin ( CFS/ME researchers) and others. Looks as if their role is as ME specialists. Am not at all happy with this.
Them being involved as "ME specialists" when they are only specialists in their own interests, and when they get so much critically wrong to the detriment of patients, is totally unacceptable to me. I won't support this study in any way if they are involved.
 

Yogi

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Question

How many other diseases are researched and funded by way of Change.org. petition ?
Very fishy.

It feels this has been already pre approved but they need patient support so we can not challenge it later on when they announce the details.

Would you sign up to buy a product or a 5 year lease on a car without seeing what the car is, any information on it, specifications, which manufacturer is building it?

No - then why are we being asked to sign something without transparency and details. We do know that two are very dodgy used car salesman indeed and cannot be trusted!

If they really need patient input why do they not ask us about criteria to be used etc?

Why are they not being open and communicating with us about any issues we may have such as criteria used, white and chalder.

Anything that has AFME and Ayme does not given me any confidence at all. They don't accept ME as neurological despite what they claim and Crawleys recent studies have used simple tiredness as ME.

Remember Crawley re-diagnoses those who don't get better with CBT and GET as persistent refusal syndrome PRS.

AFME have still not explained their position on PACE trial and why they feel it is reasonable to work with white given outstanding questions over PACE. They have been silent about PACE and have not brought any of these scandal of the PACE trial to their 'members' notice.

I note neither tymes trust or IIME are involved with this.

I think we need to ask questions of MEGA and if they are open and cooperative then fine but if not then we need to steer clear of this MEGA project.

Remember in 2003 after CMO report suggested biomedical funding we got White et all took all the funds and we got FINE and PACE. They ignored petitions to stop these Trials.

History repeating?

Otherwise in 15 years we will be fighting with them over this as with PACE.
 
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@A.B. and @AndyPR

These are valid points. However I have faith in Julia Newton, who also features as one of the researchers. The collection of this quantity of raw data will be absolutely invaluable and it will be difficult to spin it if all of the people working on the project have equal access to the data.
I have a little less faith since i discovered she pushes CBT and GET to severe people in wheelchairs.
 
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Was thinking of seeing her. Does she really do that? WTF
It will be safe to see her as she doesn't seem to prescribe it herself but the ars*holes that work in her department do. (I have a blog on here about the horrific TTT day)

I mentioned that the other doctors had tried to force me to do CBT and threatened to remove my wheelchair from me. She said 'and why exactly can't you do CBT and GET?' I was in too much shock and ill to think of an intelligent response at the time.

I went home feeling quite depressed.