Petition: Opposing MEGA

BurnA

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And if so, in what way would Invest in ME influence ( had it been the actual cause of the inflated figure at the OMEGA petition..it was not) be any different to the influence the MEA or AfME had over those signing the original MEGA petition?
What about spoonseeker - why doesn't he get any blame for the support of OMEGA, I would be very disappointed if I were him. Obviously the CMRC don't rate his blog high enough to be able to influence anyone !

Joking aside, it was very clear from that blog what the problems are. Nobody could read that blog and be baffled.
 
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I wrote:
>>It is not yet too late to correct this fatal flaw. But it soon will be.

@trishrhymes wrote:
>any suggestions @batteredoldbook?

On a foundation of mutual respect we would rebuild unity. When a sufficiently broad range of voices are heard, we would use the scientific method to select the best ideas to drive UK M.E research forward. All involved would win at least something.
Alternatively, we can continue along as we are now, where pwme can find themselves disrespected by medicine, charities and advocates, and the views of thousands are ignored or overruled. We can allow professional reputations to continue to depend on certain basic research questions remaining glaringly unanswered. We can fight about it and everyone involved will lose.
I suggest the former. Across the board, I see UK ME choosing the latter.
 

lilpink

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Was the patient community simply being asked to agree with a group of commissioners that this sort of research was worth commissioning? It seems not. I am not comfortable about the situation.
It was surely ONLY ever a trawl for a patient mandate. Hideously cynical and drawing in far more dupes than anyone would think possible (as evidenced by the number of signatories).
 
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It would be interesting to see the full thread of this conversation if only to assess who brought up the knotty question of Invest in ME influence over OMEGA signatures. As the correspondence seems to have originated from Charles Shepherd do we presume it was he who brought this nuance to the table? And if so, in what way would Invest in ME influence ( had it been the actual cause of the inflated figure at the OMEGA petition..it was not) be any different to the influence the MEA or AfME had over those signing the original MEGA petition?
From reading Charles responded to a query from Holgate about what was going on at IiME simply by saying 'why not just ask Jonathan?'. He may have been a little surprised by the tone and title of the email that then got sent to me.
 

lilpink

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From reading Charles responded to a query from Holgate about what was going on at IiME simply by saying 'why not just ask Jonathan?'. He may have been a little surprised by the tone and title of the email that then got sent to me.
That's even more bizarre. Holgate asking about a patient petition? Seriously? I'm not saying I don't believe you ..just that this gets ever more entangled and peculiar.
 

Chrisb

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and that it was far better to be putting the patient case for biomedical research from 'inside the CMRC tent' rather than complaining from 'outside the CMRC tent'
I feel that this metaphor may now have been pushed too far. There is nothing inherent in the design or structure of large tents to prevent one from going outside them and discussing openly what went on within.
 

snowathlete

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Anyone know what those outside the UK think of this MEGA shambles?

When looking at the UK research situation I can only imagine those in the US and elsewhere must think the UK is a right amateur bunch. Long history of disease denial, producing methodologically flawed research, making claims unsupported by the evidence, unwillingness to challenge bad research, dismissing and discrediting patients and carers to the point where it ends up in a court room, weak work from researchers only survives because it is promoted by a large media machine, an ignorance of change elsewhere in the world, and starting petitions for flawed research proposals and then being baffled when patients oppose it. What an embarrassment the UK is in the ME/CFS field. I imagine people elsewhere are themselves baffled - they probably wonder why groups like the CMRC don't abandon the junk, and instead carry out good quality research without all the glaring problems instead.
 

Jo Best

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Anyone know what those outside the UK think of this MEGA shambles?

When looking at the UK research situation I can only imagine those in the US and elsewhere must think the UK is a right amateur bunch. Long history of disease denial, producing methodologically flawed research, making claims unsupported by the evidence, unwillingness to challenge bad research, dismissing and discrediting patients and carers to the point where it ends up in a court room, weak work from researchers only survives because it is promoted by a large media machine, an ignorance of change elsewhere in the world, and starting petitions for flawed research proposals and then being baffled when patients oppose it. What an embarrassment the UK is in the ME/CFS field. I imagine people elsewhere are themselves baffled - they probably wonder why groups like the CMRC don't abandon the junk, and instead carry out good quality research without all the glaring problems instead.
The Open Medicine Foundation posted on facebook on Oct. 29th -

ME Global Community Plea:
help our Dutch community by signing this petition: ME isn’t MUPS: http://bit.ly/2e2Nsq7
...as well as the petition against the planned British MEGA-study in which again BPS- exponents like Esther Crawley and Peter White have a say…: http://bit.ly/2dP5ppa

Read more about each petition and cause in The ME Global Chronicle 2016 #19 Newsletter (download below)
MEadvocay.org (USA) posted on Nov 1st -

https://opposingmega.wordpress.com/2016/11/01/meadvocacy-is-opposing-mega/

The MEadvocacy.org Advisory Committee has reviewed this OMEGA petition asking for signatures to reject the proposal from the ME/CFS Epidemiology and Genomics Alliance (MEGA) for a study that is being promoted to patients in the United Kingdom.

ME is a global epidemic, therefore policies and research that are promoted in Europe often have a dramatic impact on the USA policies for addressing ME.

This OMEGA petition fits within MEadvocacy’s mission statement, so we have decided to promote this petition.

Please join us in signing the petition and share widely.

Petition link: https://t.co/nx1J9OHPJU
The Irish M.E. Trust posted in their newsletter -
https://opposingmega.wordpress.com/2016/11/11/irish-m-e-trust-is-opposing-mega/

The Irish ME Trust has no hesitation in supporting the objection to MEGA not only because of who it involves but also because they will be using the NHS clinics to get research participants using a broad fatigue marker rather than the CCC or ICC. In addition they will not be recruiting any severe ME people because these people do not present to the CFS clinics in the UK, many having been either harmed by them or dismissed from them because they have nothing to offer. The concern is here that the research pool will once again be so diluted that any findings will at best be worthless or at worst will ‘prove’ the case for ME being a psychological illness with no consistent biomarkers.
 
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Sean

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There will be a domino effect and careers are at risk.
Careers are going to be terminated over this, at some point. The current situation is completely unsustainable.

Or is this a conspiracy theory too far.
Nope. Wessely's fingerprints are all over PACE itself [1], and all the way back to the original psychogenic hypothesis tested by PACE [2], and ever since.

Far as I can tell, all the major players in and clients of the BPS cult have a Wessely Number of 1.


1. See the comment from Clark Ellis on this page.

2. Wessely S, et al
Management of chronic (post-viral) fatigue syndrome
J R Coll Gen Pract. 1989 Jan;39(318):26-9.
https://www.ncbi.nlm.nih.gov/pubmed/2553945
 

JoanDublin

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"For reasons that baffle me, there is an internet campaign to prevent us from doing this"....

It's hard to believe that Stephen Holgate could have the brass neck to write that statement. If anyone has his ear, any chance you could direct him to the comments on the OMEGA petition, the statements from various high profile individuals and also from ME organistions and, of course, the many comments on their own petition and threads here on PR. If that statement isn't trolling, then he has decided not to even glance at anything that the patient community is saying. Enough said.
 

Cheshire

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What baffles me is that Holgate doesn't seem to see any problem with a researcher that publishes an epidemiology study with meaningless criteria, that doesn't even fit the NICE criteria, that includes adolescents with heterogenous fatiguing problems, ranging from depression to bad sleep behaviour and not even seen by a doctor.

That he doesn't seem to be appalled by Crawley claiming that without CBT children won't recover, omitting to say their recovery is only delayed.

That Holgate endorses this FITNET trial which is so bad methodologically.

And there are so many other reasons to be baffled...
 
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Cinders66

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I don't know if it's the same for everyone but my gripe against the CMRC and MEGA are nicely illustrated here

Published: 22 April 2013 Prof Stephen Holgate
Scientists studying the brain scans of chronic fatigue patients have found they use additional brain regions to do simple tasks requiring attention. This may explain the problems many sufferers have with memory. The findings are just one of several new studies being presented today (22 April 2013) at the launch of a new UK-wide research body to advance understanding and treatment into this debilitating condition which affects over 600,000 people in the UK.

The UK CFS/ME Research Collaborative (UK CMRC) is a new initiative led by the country’s leading experts in the field, including those at the University of Southampton, to expand medical studies into this complex set of disorders by facilitating greater expertise and improved co-ordination of wide-ranging research activities. Researchers at the launch will be discussing some of the key issues they are facing and the areas that are making progress. They will also be explaining some of their thoughts for future research and their latest preliminary findings. These include, why some patients experience significant pain that is unresponsive to pain killers; whether using a monoclonal antibody (Rituximab), which is highly successful in treating rheumatoid arthritis, some cancers and the profound fatigue experienced in patients with an immune liver disease known as primary biliary cirrhosis, could be used as a test experimental medicine approach in order to understand more about fatigue mechanisms; and the link between blood pressure problems and CFS patients.

Professor Stephen Holgate, Chair of the UK CMRC and MRC Professor of Immunopharmacology at the University of Southampton, said: “For the first time the research community and funder in the UK have joined forces in this unique new collaboration to create a step change in the amount and quality of research into chronic fatigue and ME. By coming together in this way, the application of state-of-the-art research methodology to this complex group of conditions will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets. The key to success will be the engagement of scientists outside the field.”

Dr Esther Crawley, Reader in Child Health in the School of Social and Community Medicine at the University of Bristol, added: “CFS or ME can leave many people either housebound or confined to their bed for months or years, causing their lives to change drastically and continued employment to become impossible. We need to join forces with charities and funders to ensure we can best address the needs of patients suffering from this often life-changing condition which affects one to two per cent of adults and teenagers in Britain.”

Representatives from patient charities that support chronic fatigue and ME research will also be attending the event. These include Action for M.E, the Association of Young People with ME (AYME), the Chronic Fatigue Syndrome Research Foundation, The ME Association and ME Research UK. Some of the UK’s major research funders such as the Medical Research Council [MRC], the National Institute for Health Research [NIHR] and the Wellcome Trust will also attend.

www.southampton.ac.uk/news/2013/04/patients-with-chronic-fatigue.page

Here Crawley is conflating her CFS with ME and severe ME, Holgate is talking about chronic fatigue (not syndrome) and then seems happy to approach ME from this fatigue spectrum angle or this fatigue and ME bundle. ME IS NOT in my view best served by being seen at the severe end of a fatigue spectrum. In my mild-moderate state I didn't go to my GP complaining of tiredness, I'd had an infection and not recovered and still felt ill with any exertion making me really ill. We don't win over the public to the miserableness of our fate by lumping ME in with CF or the simplistic one size CFS that can apparently be cured in 6 months by screen time CBT.
 

trishrhymes

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The CMRC was largely put together by Professor Stephen Holgate after the MRC decided that it was no longer appropriate to continue with the MRC Expert Group on ME/CFS Research

As we have discussed many times before, the intention was to bring together a collection of researchers (current and new - with a wide spectrum of views on causation and management), research funders, the pharmaceutical industry etc

And as I have also stated many times before, on a personal basis this would involve regularly sitting down and discussing research strategy with people I may not agree with (which I am always willing to do) and that it was far better to be putting the patient case for biomedical research from 'inside the CMRC tent' rar than complaining from 'outside the CMRC tent'

You will find quite a lot of information on the MRC Expert Group on ME/CFS Research on the MRC website:

http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/
Thank you for clarifying this,@charles shepherd. I still don't understand why he praises FITNET etc. I guess we'll have to agree to differ on the broad tent approach.
 
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If White, Holgate, Crawley, Pariante, AYME, Action for ME and any other psychsocial pseudoscientific supporters leave MEGA, I think you'd find the scientists ready, willing snd able to listen to the patients, charities currently outside and other scientist's views to help create a study thst promotes the science surrounding ME. I think that's the only fix for MEGA. Given that's unlikely to happen, MEGA needs shutting down. No research is better than bad research. Psychiatric anslysis would be available long before biomedical and probably just in time for the NICE review. MEGA should be brought to an abbrupt end. Perhaps then, the scientists might consider their own collaboration and apply for funding.
 

Jo Best

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This quote from The Times sums up for me why I cannot trust CMRC or MEGA no matter how many nips and tucks or how much gloss and spin -
“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.” The Times, 2nd November 2016.
Then -
Professor Stephen Holgate said of FITNET 'Patients deserve high quality research like this' and Mary Jane Willows describes FITNET as "hugely important".
 

TiredSam

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As you will see below, for reasons that baffle us there is an internet campaign (a petition, I believe - OMEGA https://spoonseeker.com/2016/11/02/why-we-all-need-to-sign-the-omega-petition/ and http://www.investinme.org/IIME-Newslet-1609-02.htm/) to try and stop us from doing this. I am perplexed in particular by the statement on the Invest in M.E. website "MEGA will...suck away all funding for ME research for the next few years and give an impression that something is being done that will produce benefits for people with ME".
there is an internet campaign (a petition, I believe
WTF? Why doesn't he mention the original MEGA petition and describe that as a baffling campaign? Why does it only become a "campaign" and baffling at the counter-petition stage? If the original petition had had an option for voicing concerns or expressing disagreement, sufferers wouldn't have had to launch their own petition to do these things. He really seems to be expressing bafflement at the fact that the original MEGA petition was met with anything other than universal agreement, approval and gratitude.

I am concerned about someone who is so easily baffled and perplexed being allowed anywhere near research into my illness. He seems to have deliberately put his head so far up his own arse that I am finding it increasingly difficult to accept that he is merely being misled or misinformed, and am starting to wonder if he might be up to his neck in it, if I might mix a metaphor.