Petition: Opposing MEGA

[Sasha]

Sorted!

I have just written to Stephen Holgate to see if something can be done about this

Thank you very much indeed! A good - even if basic - website is crucial for good comms, these days. It seems a shame for these experts to be blogging and prepared to communicate with patients and to be let down by something like this. I hope Stephen Holgate can get onto it quickly.

 

[Hutan]

Sorted!

I have just written to Stephen Holgate to see if something can be done about this

That made me smile. If only the way to sort something was to write Stephen Holgate a letter.

But thanks for moving the issue of better communication via a website along.
ETA in case that wasn't clear, my thanks for the effort is genuine

 

[Jo Best]

IiME are committed to getting good research done in the UK and have been very successful in getting things moving. They have become a much clearer focus for research than any in the US as far as I can see. If a large genetic and metabolic study can be set up in the UK in the right way it is much more likely to provide reliable data than anywhere else much (other than Scandinavia) because of access to population based cohorts. Studying self-referred cases is almost certainly no use to us, however much patients may want to contribute.

About Invest in ME Research Advisory Board - source - http://future.cofeforme.eu/ce-IIMER-ab.shtml


A High Quality Team for High Quality Research

Invest in ME supports high quality, biomedical research into myalgic encephalomyelitis (ME).

In order to ensure that we maintain a strategy of high-quality biomedical research for the future IiME have decided to form an Advisory Board of top researchers to assist us in planning and building a strategy of high quality biomedical research into ME.

We hope this will allow more focus on research required to find the pathomechanism of the disease.

The first advisory board meeting was held in August 2014 in London.

The meeting discussed what we know about ME so far, the progress of the UCL B cell study and UEA gut microbiota research and the aims of these projects in, for example, identifying sub groups of patients and how the research Invest in ME is funding at the moment can be tied together to complement each other.

There was consensus that the most difficult part for researchers is to find correctly diagnosed patients and they rely on clinicians to do the selection process. It was discussed how there are probably very many low lying patients who have this disease but are outside of the healthcare system - something IiME has pointed out many times in the past - and it would be useful to identify those patients and enable them to be part of research efforts.

Together we are working on establishing the correct and unbiased science to be involved in ME research.

A number of key areas and possible projects have been identified.

We believe our approach to initiating biomedical research into ME is the best way to produce results and feel very strongly that the key elements of a correct and productive strategy of research into ME have been created.

IIMER ADVISORY BOARD

Dr Ian Gibson
Former Dean of Biological Sciences, UEA

Professor Jonathan Edwards
Emeritus Professor of Connective Tissue Medicine University College London (UCL)

Dr Jo Cambridge
Senior Lecturer UCL

Professor Angela Vincent
Emeritus Professor of Neuroimmunology, University of Oxford

Professor Tom Wileman
Professor of Infection & Immunity

Professor Simon Carding
Leader, Gut Health and Food Safety Programme Institute of Food Research, Norwich Research Park

http://future.cofeforme.eu/ce-IIMER-ab.shtml

 

[charles shepherd]

Presumably you count some GP's among your non ME/CFS colleagues.

Are you saying that the vast majority of GP's have no interest whatsoever in keeping abreast of developments in the field of ME/CFS research generally, or is it just the PACE Trial that for some reason never caught their attention?

And what about other diseases? Does the complete lack of interest the vast majority of your medical colleagues feel for the PACE Trial extend to other diseases? Are they interested in research into any diseases? If they are, why is ME/CFS research, or at least one important piece of ME/CFS research, so uninteresting to them?

Thank you.

Yes - I have quite a lot of contact with GPs

GPs are supposed to try and keep up to date with key developments in the conditions that they deal with on a regular basis, including ME/CFS - and most GPs try to do so

But it's not an easy task because all doctors suffer from information overload - I suffer from severe information overload!

A re-analysis of the PACE trial data that has not been published in a peer reviewed journal is NOT something that would interest the average GP - unless he/she has a special interest in ME/CFS

And all doctors (myself included) now have to go through a very time consuming yearly appraisal for the GMC at which we have to demonstrate that we are spending a considerable amount of time keeping up to date in whatever branch of medicine we specialise in

 

[JoanDublin]

Did you read my report on the 2015 CMRC conference in Newcastle -

http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

where I saw about 4 psychiatrists or psychologists out of around 100 people who attended

?

Esther Crawley is not a psychiatrist or psychologist and look where that got us. It's NOT about the profession but the underlining belief system of certain individuals that have DESTROYED the lives of many many people living with this illness while simultaneously boosting their careers and bank balances. If you can't see that I don't know how else to say it. I don't know where to find the 'bangs head' emoticon.

 

[charles shepherd]

Esther Crawley is not a psychiatrist or psychologist and look where that got us. It's NOT about the profession but the underlining belief system of certain individuals that have DESTROYED the lives of many many people living with this illness while simultaneously boosting their careers and bank balances. If you can't see that I don't know how else to say it. I don't know where to find the 'bangs head' emoticon.

I know that EC is not a psychiatrist and I am fully aware of the opinions being expressed about this doctor on PR

I was simply trying (but obviously not succeeding) in making some very simple points about the CMRC:

1 It has a membership covering a wide range of views on cause and management of ME/CFS

2 It is NOT an organisation that is endorsing, promoting or interested in pursuing the outdated psychosocial model of ME/CFS causation and management

3 It does NOT organise research conferences that promote the psychosocial model of causation

4 It does NOT hold conferences where the content is either given by or aimed at psychiatrists and psychologists

5 It is NOT setting up research studies that relate to the psychosocial model

If the CMRC was a psychosocial research group I would not be a member of it

 

[BurnA]

I will forward this to someone on the MEGA planning group

At the moment, I think it is here (rather than CMRC) that a simpler way of dealing with comments needs organising

Sorted!

I have just written to Stephen Holgate to see if something can be done about this

Stephen Holgate is going to sort out dealing with comments on Phoenix Rising ? Looking forward to that!

Seriously though ( cause that was a joke )
What on earth would Stepehn Holgate know about websites and comments ?
It shows you how out of touch the CMRC is that they don't even have their own website.

 

[batteredoldbook]

I have no problem with psychosocial theory. I have a problem with how it was tested. Until the scientific methodology within pace is openly discussed and judged by the CMRC, this body's credibility is non-existent in my mind.

 

[Yogi]

Very appropriate and timely comment.

https://twitter.com/i/web/status/791345993447043075

Quiz:. How many of these diversionary tactics do you recognise from your experience of ME politics with the UK medical establishment?

https://en.m.wikipedia.org/wiki/Category:Diversionary_tactics

 

[Jo Best]

But when you make a comment like this:

"I think the CMRC was set up to protect and serve the BPS school."

on this discussion (which is supposed to be about the MEGA study) is it not appropriate for someone who is on the Board of the CMRC to point out that this statement is not correct and briefly explain why?

CS

I expressed an opinion in response to this comment -

Prof Stephen Holgate answered:

The current understanding of the syndrome of CFS/ME is that it has an external environmental or biological trigger, such as chemical exposure or a virus, but that psychological and social factors are important in perpetuating the illness.

Does he still adhere to this belief?

I wouldn't expect a member of the board of the CMRC to agree with my opinion but it is not their place to tell me that I am of the wrong opinion.

This thread is actually about the Opposing MEGA petition.

 

[Yogi]

Another honourable charity looking after its patients interests!!

Whose interest are the MEGA supporting charities serving?

https://twitter.com/i/web/status/791361067733622784

 

[eafw]

It shows you how out of touch the CMRC is that they don't even have their own website.

MEGA should have had it set up before the petition with articles, bios, videos, references - interesting stuff - and a community liaison officer/contact to approach us and ask what we needed and how could we get involved. Seeing as they are asking for our support and all, a bit of a better effort to reach out would have been nice.

 

[Jo Best]

Just a reminder from a PR thread in 2013 -

STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC)
MAY 2013

The 25% ME Group is the only UK charity representing those who are severely affected with Myalgic Encephalomyelitis, a World Health Organization ( ICD10.9.3) classified disease, recognised by the UK Government as neurological. We subscribe to the use of the International Consensus Criteria (ICC) to clearly identify and separate ME from CFS, in order to ensure that ME is respected, treated and researched as a serious neurological disease impacting upon multiple systems of the body.

Therefore we cannot support nor validate the recently created CFS/ME Research Collaborative charter (CMRC) since, in our opinion it is an unacceptable waste of precious research funds, accommodating a range of research across a wide and vague criteria range not specific to ME. The CMRC, in our opinion, is more likely to prolong the current state of confusion rather than bring about much needed medical research or clarity.

Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME; the CMRC does not and cannot represent or safeguard the needs of people with Severe ME.

It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for Myalgic Encephalomyelitis and for people with Myalgic Encephalomyelitis to be used for CF research.

Without the separation of ME from CFS and particularly Chronic Fatigue, the 25% ME Group fears there will continue to be misdiagnosis, misrepresentation and negation of Myalgic Encephalomyelitis alongside the inappropriate perpetuation of psychological therapies charading as treatment, that, as our research has shown, does great harm to our members.

The 25% ME Group supports the need for medical research, using specific criteria to safely identify Myalgic Encephalomyelitis, so that ME can be studied and identified accurately in research; this will not come about through, non ICC-based research into vague “CFS/ME”.

For these reasons, the 25% ME Group, along with other concerned ME charities (ie, Tymes Trust, IiME and Grace Charity for ME) wholeheartedly cannot support the CFS/ME Research Collaborative charter.

The 25% ME Group

http://www.25megroup.org/info_news.html#CMRC

http://forums.phoenixrising.me/inde...ch-collaborative-charter-cmrc-may-2013.31525/

 

[Jo Best]

And Tymes Trust Statement on CMRC in 2013 -

http://www.tymestrust.org/txt/alert201305meawarenessday.txt

 

[anniekim]

Edit: Apologies I see someone has already posted this excellent comment. Admin feel free to delete my post.

A chairwoman from a local UK ME Asupport group has commented under the OMEGA petition explaining how they after discussion are firmly against the MEGA study. I thought it was worth copying and pasting in full:

"I am the Chair of a local support group representing PWME in Sheffield and the surrounding areas. At the recent Board Meeting of the Trustees of the Sheffield ME and Fibromyalgia Group we discussed the MEGA project in depth and took a decision on where we stand. We wish to state that we categorically do not support this project. The rationale is simple: we are committed to supporting, promoting biomedical research into the neuro-endocrine immune system illness. We have no confidence in individuals behind the trial that have had connections to the flawed PACE trial and believe that funding could and probably will be directed away from pure bio-medical research rather than psycho-social research. We believe that the professional ethics of petitioning the public for support and in particular the vulnerable community of patients and carers is questionable. We believe that any research should represent all PWME and not exclude the most severely affected which the MEGA trial have not even considered. The wording of the petition includes words such as ‘biological’, biomedical’ big data’ ‘potentially game changing’ all emotive terminology that could mislead patents and carers desperate for definitive diagnostic tests and medical treatments but their updates show just how little thought and planning has been given by the team to their own proposal.

We believe that PWME, their families and friends should NOT support the MEGA petition but instead support the OMEGA (Opposing MEGA Petition) to make sure that any funding goes specifically to bio medical research without the involvement of key members and advisors of MEGA who are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School’.

We believe we have a duty of care to our members and people with ME in general, their families and their carers to oppose the MEGA trial, it is an opportunity for the larger ME community to stand together and raise their voice to make sure it is heard once and for all that we need bio-medical research and will not be hoodwinked by the BPS movement any longer."

 

[JoanDublin]

I know that EC is not a psychiatrist and I am fully aware of the opinions being expressed about this doctor on PR

I was simply trying (but obviously not succeeding) in making some very simple points about the CMRC:

1 It has a membership covering a wide range of views on cause and management of ME/CFS

2 It is NOT an organisation that is endorsing, promoting or interested in pursuing the outdated psychosocial model of ME/CFS causation and management

3 It does NOT organise research conferences that promote the psychosocial model of causation

4 It does NOT hold conferences where the content is either given by or aimed at psychiatrists and psychologists

5 It is NOT setting up research studies that relate to the psychosocial model

If the CMRC was a psychosocial research group I would not be a member of it

You have answered many questions that I haven't asked nor did I need to ask.

 

[JoanDublin]

Just a reminder from a PR thread in 2013 -




http://forums.phoenixrising.me/inde...ch-collaborative-charter-cmrc-may-2013.31525/

Says it all for me

 

[JoanDublin]

Very appropriate and timely comment.

https://twitter.com/i/web/status/791345993447043075

Quiz:. How many of these diversionary tactics do you recognise from your experience of ME politics with the UK medical establishment?

https://en.m.wikipedia.org/wiki/Category:Diversionary_tactics

Yes indeed. Focus, focus, focus

 

[Yogi]

MEGA should have had it set up before the petition with articles, bios, videos, references - interesting stuff - and a community liaison officer/contact to approach us and ask what we needed and how could we get involved. Seeing as they are asking for our support and all, a bit of a better effort to reach out would have been nice.

Yes but they do not wish to communicate with patients and have us involved in the design of the study. That is the whole point!!!!!! It would interfere with their desired goals!

 

[Aurator]

A re-analysis of the PACE trial data that has not been published in a peer reviewed journal is NOT something that would interest the average GP - unless he/she has a special interest in ME/CFS

And all doctors (myself included) now have to go through a very time consuming yearly appraisal for the GMC at which we have to demonstrate that we are spending a considerable amount of time keeping up to date in whatever branch of medicine we specialise in

Thank you for your reply.

I perfectly understand the PACE data re-analysis not being something that would interest the average GP at the moment, given the current non-peer-reviewed status of that re-analysis.

What I'm less sure I understand the reasons for is that it is the PACE Trial itself (i.e. not its recent re-analysis) that you say the vast majority of your ordinary medical colleagues don't know about and have no interest in whatsoever.

This does seem to show a worrying failure to "keep up with developments in the conditions they deal with on a regular basis, including ME/CFS." If "most GP's try to do so", it's hard to reconcile this with your earlier assertion about the vast majority of your medical colleagues not even knowing about the PACE Trial and having no interest in it whatsoever.

It's difficult to avoid the conclusion that the reason for the widespread failure on the part of GP's and other medical professionals to keep up with developments in ME/CFS research is that ignorance in this case is felt to be excusable on the grounds that the condition itself is of very dubious status to begin with (at least in the eyes of many medical professionals).

This seems to be borne out by my recent meeting with a professor of rheumatology, who regularly has ME/CFS patients referred to him, but who it was apparent had never heard of Fluge and Mella or the trials thay have been undertaking into Rituximab. My meeting with the rheumatologist was perfectly amicable, I might add, and it was he who asked me what treatments I knew of for ME/CFS or had heard might be in the pipeline, not the other way round; I am the last person on earth who would choose to put people who are trying to help me on the spot about the extent of their knowledge of one particular condition out of the many that come within their remit.

I don't ask that you respond; please devote your energies to the worthwhile work you're continuing to do behind the scenes on our behalf.