MEGA and PAG website update (March 29th 2017)

[Snowdrop]

@JohnCB

I tend to agree with that supposition--that the CA is not really enforceable. But I understand if those involved don't want to test that.

 

[Esther12]

New CMRC minutes include info relevant to MEGA: https://www.actionforme.org.uk/uploads/images/2017/03/DRAFT_Minutes_CMRC_21.3.17.pdf

The CMRC initiated an endeavour to bring together the very best UK
scientists from a range of disciplines including the omics, informatics and
other areas to form an Alliance with a view to establish a well
characterised bioresource with a range of data from 12,000 participants.
The grant submitted to Wellcome was unsuccessful; a grant is about to be
submitted to the MRC tissue banking call.The model of getting people
together to work in this way is a viable model and that is why we have
invited a broad range of guests to engage with the ambition.

I thought that this was a worryingly weak point to be made about studying treatments for a fluctuating condition like CFS:

You can’t not believe patients if they tell you something works;
there must be something in their experience and it should be
listened to.

MEGA Update

EC provided an update on the latest application which has been
developed within two weeks once permission to apply
from Bristol University was received. The MEGA team
has been working on the application which will be submitted to the MRC tissue banking call
imminently. This application will be for sample collection only due to the
nature of the call. Analysis, including GWAS (genome wide association
study,) will be required as a second stage.

The Patient Advisory Group met yesterday evening with EC and SC’s
colleague. There has been considerable input and the design of the study
has changed as a result.

Should the website make mention of the fact EC and GM (Gabrielle Murphy) are quacks?

Website
ES has been working on this and asked how we reached consensus over
content. There are two options to register disagreement-we can do this
for each item that we disagree on or as a header for the page. EC
suggested that a sub group meets for 2 hours before the next meeting
and goes through all the issues so that there was consensus.
It was agreed that EC, GM and the three charities would be invited to
attend this meeting.

The best news is that the worst charity is now gone!:

SC reported that MJW will be standing down from the Board due to the
pending closure of AYME on 3 April 2017 and the launch of Children’s
Services by Action for M.E. MJW will transfer to Action forM.E. as the
new Head of Children’s Services. Action for M.E. representation will
continue to be provided by SC.

 

[AndyH]

If a 24 hour or more delay in onset of PEM is not usual for the onset of PEM in a sufferer, then the diagnosis doesn't meet with the NICE guidelines. This has been confirmed in writing by NICE.
If a diagnosis can't even meet the NICE criteria, then it's certainly not ME/CFS.
If Crawley gets her way, she'll presumably diagnose ME after three months of fatigue and one other symptom as she repeatedly states is ME/CFS is diagnosed.

If the severe are determined by Crawley, then the most severely affected will not be included in the trial. Only those mild or moderately affected. Crawley has stated on numerous occassions that those that attend her clinic only manage a day or two a week of school and so only the most severely affected get treatment. This is clearly rubbish. If a child can attend school, they're not severe.
Furthermore, Crawley decided that the six most severe in clinic had PRS because she considered their function to be too low for ME/CFS (check out her G160(P), G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis http://adc.bmj.com/content/99/Suppl_1/A70.2
She clearly has absolutely no intention of accepting the severity levels present in severe ME.
To further support this, a talk last year, identified that Crawley or her clinic were insisting that tube feeding or paralysis are not part of the ME spectrum.
MEGA's statement on managing the severe made it clear they thought the severe could attend clinic. Clearly impossible.

It is my opinion that whilst Crawley and AfME have anything to do with the study, it's a non-starter.
Why the scientists don't just ditch them and put in their own application, I'll never understand.

 

[Dr Speedy]

It is my opinion that whilst Crawley and AfME have anything to do with the study, it's a non-starter.
Why the scientists don't just ditch them and put in their own application, I'll never understand.

That's because professor Hollgate etc are in bed with the PACE trial Pinocchio Psychiatrists

 

[AndyH]

That's because professor Hollgate etc are in bed with the PACE trial Pinocchio Psychiatrists

Maybe but the real scientists don't need Holgate. They're clearly just going with the flow. They need to grow some and start standing up for the science they know sufferers desperately need.

Perhaps Holgate is in bed with someone but those involved with PACE aren't who immediately spring to mind