Petition: Opposing MEGA

[slysaint]

What goes on behind the scenes of the CMRC is one of the reasons I can have no confidence in the M.E./CFS Epidemiology and Genomics Alliance. By The Young ME Sufferers Trust - https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

already posted this in its entirety on this thread a few posts above this one. And you liked it!

 

[Wildcat]

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The Dossier of behind the scenes CMRC emails was first released by Jane Colby (Director of the Tymes Trust) in August 2014, having been obtained by FOI.

The Young People's ME Trust (Tymes Trust) Publications and Reports:

http://www.tymestrust.org/tymespublications.htm

http://www.tymestrust.org/

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[slysaint]

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The Dossier of behind the scenes CMRC emails was first released by Jane Colby (Director of the Tymes Trust) in August 2014, having been obtained by FOI.

The Young People's ME Trust (Tymes Trust) Publications and Reports:

http://www.tymestrust.org/tymespublications.htm

http://www.tymestrust.org/

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Yes it says as much in the post I mentioned above.
Here we go again.....................

 

[Wildcat]

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I meant it is a great shame that more notice of the emails were not taken at the time of release .... as someone who had to defend them against numerous superfluous criticisms at the time.

And not everyone is aware of the Tymes Trust or all the highly significant work and Reports they have done over the years.... including a joint documentary with BBC Panorama 1999 .... thus the links ...
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[Jo Best]

already posted this in its entirety on this thread a few posts above this one. And you liked it!

Sorry I should have done the quotey thing, blame it on the brain treacle

 

[Ysabelle-S]

Re: MEGA and the latest revelations, to quote Blade Runner, "I was quit when I came in here. I'm twice as quit now."

 

[slysaint]

And not everyone is aware of the Tymes Trust or all the highly significant work and Reports they have done over the years..

I hadn't heard of them either, or Jane Colby for that matter. Seems to me (although she did some work for AfME in 2000) she is far more of an expert on paediatric ME/CFS than EC is. Shame we couldn't pick our own 'team'.

 

[Snowdrop]

I am very sick. I have been sick to varying degrees for decades. And I'm wearing down. When I have bad days they are very bad indeed.
I don't know how long I'll last or if I'll go quickly from a heart condition. I am (very slowly) putting my affairs in order.

What I still think about ME research in the UK is this despite my desperation: I would be (grudgingly) content if every single researcher in the UK would cease and desist from doing anything around ME research. NOT ANOTHER THING. I would be glad if they stayed away--found some new interest to pursue.

I'm sure there are other things the world class researchers could find interesting -- just not this. I say we renew our efforts and concentrate on funding/supporting/developing contacts with researchers in the US, Australia, Norway, perhaps Japan, Germany and other countries where we might manage to get research untainted by this BS. I would like to see Canadians contribute too perhaps in an international collaboration. The UK is not the only place metabolomics etc can happen.

Perhaps this could be incubated at conferences like IIME.

 

[Jo Best]

Perhaps this could be incubated at conferences like IIME.

I think it is. The Biomedical Research into ME Colloquium is now a two-day closed workshop prior to the public conference and there are informal opportunities to raise and discuss new ideas at the dinners that IIME arrange over the week of events (the whole week includes EMEA AGM and EMERG meetings). 2017 will the 7th of these (BRMEC7).

 

[charles shepherd]

As I think the current social media discussion isn't really raising any new points about the pros and cons of the MEGA study I have placed the following message on the MEA Facebook page

I would however be interested to read people's views on the question I pose - which is whether they would still want to stop this research dead in its tracks if it included the ME Biobank samples, including those with severe ME/CFS (who meet Canadian and Fukuda diagnostic criteria)

Message on MEA Facebook:

I don't think there is much point in continuing this CURRENT discussion on the OMEGA petition on MEA Facebook because:

1 All the key points in favour and against the MEGA study, based on our current state of knowledge of a protocol that is still being discused and developed, are now just being repeated

2 The internet discussion on MEA Facebook has been somewhat taken over by a small group of people who are very vocal both here, and elsewhere on the internet, in their very fixed opposition to OMEGA and the campaign to stop the study taking place - even though the protocol (ie design) of a complex piece of research is still being discussed and a patient liason group has not even met

Could I therefore move the discussion in a rather different direction and ask people one very simple question:

If the MEGA study were to include blood samples from the ME Biobank (part of the UCL Biobank) at the Royal Free Hospital in London - where we have collected blood samples (equating to over 30,000 aliquots now being stored) from over 500 people comprising a large group who have Canadian and Fukuda defined ME/CFS (including very detailed anonymised clinical information), healthy controls, and people with multiple sclerosis (where debilitating fatigue is a common feature) - would you still want to stop the MEGA study taking place?

Or do you really want to stop this research dead in its tracks right now and say to the distinguished group of biomedical research scientists (listed below) that have been recruited over the past year or so (like Professor Chris Ponting) that their expertise and enthusiasm for getting involved in ME/CFS research is not now required - so they can take their expertise and enthusiasm to some other disease where the patient community would welcome their input

* Genomics – Prof George Davey-Smith (Bristol), Prof Chris Ponting (Edinburgh), Prof Colin Smith (Brighton)
* Epigenetics – Prof Caroline Relton (Bristol)
* Proteomics – Mr Tony Bartlett (Somalogic)
* Metabolomics – Dr Rick Dunn (Birmingham)
* Routinely collected data – Prof Andrew Morris (Edinburgh) and Prof David Ford (Swansea)
* Infection – Prof Paul Moss (Birmingham)
* Sleep – Prof Jim Horne (Loughborough)
* Pain – Prof Maria Fitzgerald (UCL)
* Prof Julia Newton (Newcastle)

I obviously have both a personal and professional interest in trying to find an objective way of diagnosing this illness (and separating it from other causes of chronic fatigue and ME/CFS like symptoms), what causes it and how it can be effectively treated

I have no interest in pursuing psychiatric research into this illness and do not support money being spent of psychiatric research or behavioural interventions

But I really do find it depressing to see that people are being asked to oppose this research on the basis that the use of various types of -omics to look for biomarkers associated with clinical phenotypes (ie sub-groups) of ME/CFS is psychiatric research when this is clearly not the case

Dr Charles Shepherd
Hon Medical Adviser, MEA

ME Biobank: http://cureme.lshtm.ac.uk

 

[BurnA]

The internet discussion on MEA Facebook has been somewhat taken over by a small group of people who are very vocal both here, and elsewhere on the internet, in their very fixed opposition to OMEGA and the campaign to stop the study taking place - even though the protocol (ie design) of a complex piece of research is still being discussed and a patient liason group has not even met

Your message would have been so much better without that paragraph.

 

[Jo Best]

I think the horse has bolted. MEGA should have considered the impact their petition may have in the light of several aspects that have been discussed on this thread.

 

[Jo Best]

To add, this is about EMERG for those who may not have heard about it -
http://www.investinme.eu/IIMEC11-news-0402.shtml

I think it is. The Biomedical Research into ME Colloquium is now a two-day closed workshop prior to the public conference and there are informal opportunities to raise and discuss new ideas at the dinners that IIME arrange over the week of events (the whole week includes EMEA AGM and EMERG meetings). 2017 will the 7th of these (BRMEC7).

 

[Ysabelle-S]

Everything that's happening in relation to opposition to MEGA is a direct consequence of the psych lobby completely destroying all faith in UK research. The situation is made worse by the fact we can contrast some of the best international research with the utter garbage coming out the UK. I know there are bad researchers in this field elsewhere, but the UK is the absolute pits (with some exceptions). If MEGA included none of these BPS supporters, and was purely biomedical and used better and tighter diagnostic criteria, as well as the biobank, then I'd support it. As I've said before, I was very happy to see Julia Newton on the list, and more people like that are certainly welcome.

 

[Hutan]

I would however be interested to read people's views on the question I pose - which is whether they would still want to stop this research dead in its tracks if it included the ME Biobank samples, including those with severe ME/CFS (who meet Canadian and Fukuda diagnostic criteria)

500 people's samples (some of which are from people with MS and healthy controls) - I don't know how many people with ME that leaves or how many of those are severely affected but it doesn't really matter. It's a tiny drop in the bucket of 12,000 samples.

But I find your question surprising as it seems to ignore the main issue opponents of MEGA, as it is currently constituted, have - the involvement of White and Crawley and the lack of transparency. So, my answer is 'no', while White and Crawley are involved, I would not want to see this research proceed.

The internet discussion on MEA Facebook has been somewhat taken over by a small group of people who are very vocal both here, and elsewhere on the internet

I think it is not at all helpful for you, an advocate for people with ME, to be saying this and by inference implying that opposition to MEGA is coming from a small bunch of radicals.

I am a 50 year old, law-abiding mother with ME and with a son with ME. I am not some radical. But neither am I stupid or ill-informed. I have been reading about this illness most days for several years now. And, even here on the other side of the world, I have seen and personally experienced the harm people like Crawley and White have inflicted. I think it is perfectly reasonable to object to any enormous ME research project that involves them.

Perhaps you can explain to us why this research (or something like it but better thought out) could not proceed without White and Crawley?

 

[Esther12]

Given the way in which Wessely, White, Crawley & co have used the 'small, vocal group with fixed views' theme to try to smear and dismiss patients raising concerns about their research, I think that it's a mistake for a patient group to use that sort of language.

Are those supporting MEGA a small and vocal group with fixed views?

If you think a small group of people are being unreasonable, best to name names and challenge them on it imo.

Everything that's happening in relation to opposition to MEGA is a direct consequence of the psych lobby completely destroying all faith in UK research.

And the refusal of so many of those in authority to engage with patient concerns. The scandal of their past behaviour is not going to go away, and lots of patients are not going to support the work of people like Crawley unless she has issued some truly grovelling apologies.

 

[daisybell]

@charles shepherd I don't understand how you can so confidently write that this research to look for bio markers is clearly not 'psychiatric'. Of course, taking it at face value, that appears to be the case, but as we all know to our detriment, there have been plenty of studies apparently looking at biomedical issues in ME that have concluded a psychiatric basis for these findings simply because of the particular bias of the researchers. Having researchers associated and indeed advising the MEGA team who have been involved in this psychiatric spin is intolerable - and I believe rightly so.

I'd love to be able to support MEGA but I can't as it stands. I'd rather no money was spent if we end up with biomarkers explained away by psychiatric theories. The slate must be wiped clean before the study starts. Getting great talent in other research areas into ME/CFS is of no help if their advisors are the same old BPS crew. In fact, it could be significantly harmful. Surely you can appreciate this?

 

[Ysabelle-S]

@Esther12 Yes, the scandalous history cannot be wiped out. It has done terrible damage. The patients cannot just move on and suddenly start trusting. Trust usually has to be earned. There's been no attempt to earn our trust, no apologies. For MEGA to work, the UK would have to take a leaf out of Norway's book and issue an apology to ME patients, complete with a promise to focus on biomedical funding and to abandon the BPS model. Anyone associated with the BPS school would have to be dropped from MEGA. Even if the study is delayed while new and better people are recruited, it would be better than the current situation.

 

[Jan]

2 The internet discussion on MEA Facebook has been somewhat taken over by a small group of people who are very vocal both here, and elsewhere on the internet, in their very fixed opposition to OMEGA and the campaign to stop the study taking place - even though the protocol (ie design) of a complex piece of research is still being discussed and a patient liason group has not even met





Dr Charles Shepherd
Hon Medical Adviser, MEA

ME Biobank: http://cureme.lshtm.ac.uk

Dr Shepherd, do you realise how much you sound like Wessley et al in this statement? We are vocal because we are so scared and desperate and you condemn us for it. I have been making myself more and more ill since the MEGA announcement, spending way too much time online and giving myself severe eye strain and migraines every day. Why? Because I feel like nobody is speaking up for the patients, we have to do it for ourselves. It's not a small minority objecting to it though is it, at nearly 1000 signatures? Plus a whole patient organistion, Iime and Johnathon Edwards.

How on earth do you expect us to trust anything with BPS/PACE people in it, please tell us? Are we supposed to ignore the struggles and hard work of the last 5 years and just roll over and accept they will remain a part of the ME landscape? Over my dead body, and I probably will be dead before we finally get rid of these wicked liars.

I will end by saying that this is not a personal attack, I admire and respect all the hard work you do for the MEA.

 

[BurnA]

@charles shepherd
No doubt a lot of effort has gone into MEGA so far, but it appears it is a big mess at the moment.
I think its fair to say this is a reflection more on CMRC and those involved with MEGA than the patients who are raising legitimate concerns and asking pertinent questions.


The inclusion of the 500 biobank samples seems like a token gesture to me, it would be better than the current state but it does not address all the concerns, I wont repeat them here but for that reason I would not support MEGA.


If the protocol is still being discussed and developed why don't you wait until there is something better before asking for support ? You know what is required I am sure.

But I really do find it depressing to see that people are being asked to oppose this research on the basis that the use of various types of -omics to look for biomarkers associated with clinical phenotypes (ie sub-groups) of ME/CFS is psychiatric research when this is clearly not the case

No Charles, people are opposing this research because of the inclusion of White and Crawley, whose research has harmed and continues to harm ME patients.