Petition: Opposing MEGA

[Barry53]

To take the matter rather off topic, one can understand the preference for the name CFS/ME over ME/CFS. Were it called ME/CFS the group name would be MCRC.

This post (#27), by @Wildcat, gives a much more likely and sinister reason for preferring "CFS" to head the billing:-

http://forums.phoenixrising.me/inde...ollaborative-uk-cmrc-tymes-trust.32302/page-2

My feeling is that it also helps them subliminally promote their chosen message: that generalised fatigue is the more dominant issue, rather than ME .

 

[Sidereal]

The history of the term 'CFS/ME' is sinister. When I see someone using it, I know immediately they're likely to be a UK psychobabbler. Everyone else just uses ME or ME/CFS.

 

[Barry53]

When I went to the University hospital in Berlin, the doctor told me that he had visited ME centres in England, and to my amazement, told me how impressed he was, as described in part 5 of my blog:

http://forums.phoenixrising.me/index.php?entries/trip-to-the-charite-in-berlin-part-5.1960/

So it seems some centres are doing their best. I heard that there is considerable risk involved in not following NICE guidelines in the UK, which may be why decent people doing their best for ME patients can't blow their own trumpet about it. The way Dr Nigel Speight was inconvenienced serves as a reminder of what can happen to those who incur the wrath of those determined to maintain the prevailing BPS model in the UK.

In a way this is heartening: It shows that within the NHS there are a great many decent, high integrity professionals who want the best for their patients, and who fully appreciate the NICE guidelines will not benefit their patients. What a disastrous pantomime it all is.

 

[user9876]

On a MEGA-related note, I feel like history is repeating itself. I am very bothered by people showing up at conferences proudly proclaiming they know nothing about ME/CFS whilst having the temerity to seek grant money to study the disease. I feel like these scientists think we patients should be grateful for any scraps from the table thrown our way.

I don't mind people expressing their ignorance once but when they are saying the same thing for several years and without a coherent plan to improve their knowledge it is concerning. I can see you could say from what I have heard this may be an interesting thing to explore. But then you need to think through the hypothesis and that requires understanding the disease characteristics. Given the lack of knowledge in the medical establishment I think the best way to do that is to talk with patients. Patients repeatedly saying that the descriptions that Crawley and others don't represent their experience of ME should be a clue that they need to find out more. But instead they simply dismiss patients.

 

[Jo Best]

http://forums.phoenixrising.me/inde...es-me-cfs-research-projects-worth-1-6m.13795/

This page should help Trish - http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

Edit - sorry I meant @trishrhymes

 

[AndyPR]

So, from what I can see, they last funded some research in 2011/12. Just what the hell have they been up to in that tent since?? It can't have been properly working on MEGA as, you know, they haven't started working properly on MEGA yet. What a waste of 5 years of patients lives.

 

[JohnM]

...

PR is not an isolated internet echo-chamber where the converted preach to each other. It has thousands of members, and many new ones joining every day (I know because I work on the door most evenings), plus I suspect a very wide readership of non-members who don't feel the need to join up. Like other posters above, I think the main reason why many PR members oppose MEGA is simply because they are the most savvy and well-informed section of the ME community.

An education in the politics of ME was the last thing I wanted when I came down with the illness, I could happily have done without it. But I do agree with the view shared by the doctors, scientists, patient charities and few thousand ME sufferers who have signed the OMEGA petition, that the MEGA tent stinks. Be a real shame if some of the smell starts to rub off on the MEA.

@TiredSam
I was one of those non-members who did not join up here for a long time, and like yourself I did not want to become involved in the politics of ME; this bloody awful disease is difficult enough to live with, but enough is enough.

@charles shepherd
I am a MEA member and the latest copy of ME Essential has arrived on my doorstep today, for which thanks kindly to all at MEA. The article on MEGA (So what do YOU think about the new MEGA project? p26-7) looks pretty much like a cut and paste job from the MEGA petition web site; the only nod to concerns raised about MEGA here and elsewhere is provided by Neil Riley, the Chairman of the Trustees (p2) in summary as follows:

"
...

Patients need to have confidence in this study. The proposers of MEGA agree that this is vital. Independent researchers acceptable to the patients and without links to PACE would ensure not only that justice was done but was seen to be done.

The structure of the study and the researchers involved need to be like Caesar's wife "beyond reproach". Otherwise the results may well be tarnished by association and that would be a tragedy for researchers and patients alike."

Difficult as it is to keep up with all related threads about the proposed MEGA study, I do not think any answer has been provided to date, with regard to why MEA members should be asked for their views at this time? Or how members can be expected to make an 'informed' decision on the merits of the study, or otherwise, given the complete lack of any meaningful detail on MEGA to date?

There is no agreed protocol, no patient advisory panel in place, and serious concerns with regards to patient cohort and some members of the MEGA group, as acknowledged by Neil. I am disappointed that no link was provided to the OMEGA petition alongside others links provided at the end of the article, information which MEA members should be made aware of, in the interests of balance.

As I think you have alluded to previously (and I paraphrase), you will not make a final decision on supporting MEGA or otherwise, until all the protocols and the like are agreed. I would ask that you extend the same courtesy to MEA members, and not continue to seek their support for MEGA at this time, as appears to the case?

Apologies on the long post, with thanks for all you do Dr Shepherd, and hope that my comments are taken to be constructive, rather than as complaint.

ps
I do not have a facebook account, and have no intention of getting one, but I will try to offer further constructive comment via direct email to the MEA .. gotta rest some

 

[Barry53]

The history of the term 'CFS/ME' is sinister. When I see someone using it, I know immediately they're likely to be a UK psychobabbler. Everyone else just uses ME or ME/CFS.

In fairness there is so much confusion over the naming, that I think a lot of non-babblers also use the two versions interchangeably, including myself probably in the past.

 

[Barry53]

So, from what I can see, they last funded some research in 2011/12. Just what the hell have they been up to in that tent since?? It can't have been properly working on MEGA as, you know, they haven't started working properly on MEGA yet. What a waste of 5 years of patients lives.

For them the truth would be dangerous. Why would they fund their own downfall?

 

[Barry53]

... the only nod to concerns raised about MEGA here and elsewhere is provided by Neil Riley, the Chairman of the Trustees (p2) in summary as follows:
...

The structure of the study and the researchers involved need to be like Caesar's wife "beyond reproach". Otherwise the results may well be tarnished by association and that would be a tragedy for researchers and patients alike."

But of course as we all know, words are cheap, actions are what count.

 

[AndyPR]

Yep, got my copy of ME Essential today as well, I agree that it merely looks like a cut and paste of information that appeared on the MEGA petition, although I don't remember the ludicrous claim that

The MEGA group want to engage with as many people as possible, especially in the early planning phase.

I'll scan the pages and post them here in a short while.

And I obviously agree with @JohnM , why would we want to sign up to anything where the important details haven't been agreed?

 

[worldbackwards]

If, given @charles shepherd's comments, the treatments in Chronic Fatigue centres are not actually CBT and GET but are advertised as such, does that mean that any figures for the effectiveness of these treatments in those centres, such as those collated by Simon Collin, should be treated as spurious?

 

[Cinders66]

I think the results, or lack thereof, of that arm-twisting experiment show us that this is not the right way to go about getting more high-quality biomedical research in the UK. You cannot force good research to happen with a parliamentary decree; it's an organic process that has to start with good ideas and those are sadly in very short supply in the UK ME/CFS research community. Those 5 studies were, as many of us predicted, a complete waste of money which has led to no major insights into ME/CFS, mostly just money being funneled into those applicants' existing research interests in other diseases. Have any publications on ME/CFS actually come out of those MRC grants? The MRC gets to pat themselves on the back for supposedly funding 5 biomedical ME/CFS research projects while the 'real world' outcome of this exercise has been diddlysquat for the patients.

On a MEGA-related note, I feel like history is repeating itself. I am very bothered by people showing up at conferences proudly proclaiming they know nothing about ME/CFS whilst having the temerity to seek grant money to study the disease. I feel like these scientists think we patients should be grateful for any scraps from the table thrown our way.

I don't know whether the parliamentary debate was more coincidence or nudge rather than driving force for this one off funding allocation. The ME expert group was set up around 2008 to decide priorities foster research etc and I think the eventual RFA was a culmination of a dawdling, long drawn out process. The minutes of the ME expert group meetings are available and reflect a lot of the same names as now. CFS as a biological illness brand is completely failing in U.K, of course greatly undermined by repeated mass media efforts by the CBT lot. The uk establishment recognise CFS isn't getting funded, isn't taken seriously to attract interest yet will do nothing much aside a yearly conference to address that UNTIL MEGA subgroups, then I assume they might allow the current subgroups to be recognised in their own right, with a better name and more chance of proper recognition but frankly I might well not be around by that time, too much time has been wasted already and the urgency just isn't there. At the recent CMRC meeting all we heard from the funders were excuses and tips on producing better applications, the real damning report of the AFNE/MRC regarding funding over last decade worldwide was given a brief ten minutes report and no discussion time. Severe ME which got its first slot in a CMRC prog (and this is a criticism of worldwide conferences too) was made an optional workshop instead of put centre and people forced to encounter WHY there needs to be urgency and funding. I can't take seriously an MRC who in 2012 were insisting a small start was all that was possible in the field. Frankly F U MRC as in that following time people have died.

 

[JohnM]

If, given @charles shepherd's comments, the treatments in Chronic Fatigue centres are not actually CBT and GET but are advertised as such, does that mean that any figures for the effectiveness of these treatments in those centres, such as those collated by Simon Collin, should be treated as spurious?

And therein lies @worldbackwards ..

I can only relate my own (thankfully short-lived) experience at a CFS/ME clinic, in which I was given information on PACING and GET; the two constructs used interchangeably, and I was not convinced they were any the wiser as to which was which at that time - 2011?

Likewise, I suspect there was/is no agreement on what SMC means in practice, and so this cannot/could not be standardised either ..

 

[batteredoldbook]

Just because some UK Chronic Fatigue Centres may currently use pacing informally it does not follow that they will choose to keep doing so or will be permitted to keep doing so. As things stand, UK pwme remain vulnerable to official NICE guidelines and these are justified by what Virology Blog calls "sham" science.

True pacing is about giving the M.E patient autonomy. GET, GAT, Activity Management, Sleep Hygiene, CBT "Homework": these are all elements of external control. Medicine can't seem to bring itself to trust M.E patients to manage their own condition, and this is a shame, because we're often much better at it.

The true context for "MEGA" is a shocking mess: There is a glaring and unaddressed problem with The PACE Trial, and British medicine is treating CBT as if it were some form of panacea. Instead of working to classify and differentiate, medicine is working to lump conditions together as "Medically Unexplained". Both people with M.E and their physicians are taught to deny symptoms, and public stigma is stoked by wild research claims and bias.

Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients.

This situation is #notnormal. And every time a charity, physician or researcher pretends that things are "okay" and that we can carry on as usual, they slip one notch further into negative credibility. MEGA is rejected because the CMRC isn't trusted. But the issue is far larger: For Pace to continue to exist an unbelievably large number of problems must also exist within British medicine. From ethics committees through to GPs, from research collaborators to tv doctors: Pace isn't the Titanic, Pace is the tip of the iceberg.

@batteredoldbook

 

[trishrhymes]

I too have just read my new copy of ME essentials. I'm afraid the MEA is making the same mistake MEGA made with their petition - asking for opinions on something yet to be defined and without full information, and offering only Facebook as a medium for discussion and seeing other people's comments.

Also the link to the MEGA 'website' is simply to the Change.org MEGA petition and associated info. The petition is closed, but I've just gone in and added to the comment I put on the MEGA petition a few weeks ago, giving links to OMEGA and to this discussion thread.

I suggest one action we could take to alert people to our anxieties about MEGA is to go and up-vote any comments we agree with on the MEGA and OMEGA petitions.

For the record in case my comment gets taken down, here it is in full.

'I have had ME for 27 years, currently housebound.

In principle I think this is potentially a very useful study, and I commend the principle of open data.

I cannot understand why there is any need for psychiatrists or anyone who uses a biopsychosocial model of ME to be involved. I await a convincing explanation with interest. I cannot see any way in which they can 'complete the picture'. Would you include psychiatrists in a biomedical study of MS or rheumatoid arthritis? I think this is the biggest aspect that is causing consternation among patients, who have been badly let down by the now discredited biopsychosocial model and its proponents.

I am very concerned that the use of CFS clinics as the source will badly skew the sample, leaving out long term sufferers and the severely effected. I think it is vital that these types of patients be included as their biochemistry may be dstinctly different. Otherwise it is a study of mild chronic fatigue.

I hope you will find a way of having patient representation from a variety of patient groups, not just AFME. I particularly want to see the severely affected included in the consultation. This will probably have to be done on-line. The long term and severely affected have a world of experience to offer and many have a good deal of scientific knowledge, as well as experience and wisdom.

Edit November 2016: Sadly the more I hear about this proposed study, they more disquiet I feel. I have signed the petition opposing the study:
https://www.change.org/.../opposing-mega-a-vote-of-no...
If you want to see and join in a lengthy discussion about MEGA, see:
http://forums.phoenixrising.me/index.php...
Look out particularly for comments by Prof. Jonathan Edwards and Dr. Keith Geraghty.'

 

[Jonathan Edwards]

There was a question on facebook whether @Jonathan Edwards and @Keith Geraghty would mind their comments here reposted on the Opposing MEGA website? Thank you both for sharing your thoughts and experiences in the public domain. The truth can hurt, but patients and various professionals deserve honest and open debate, especially after being so effectively silenced for so many years. We can change course and forge or follow the right path.

My comments are in the public domain. I do not want to lose sight of the fact that everyone would like to see a comprehensive genomics study done in the UK, in particular. I am just concerned about the way people are going about it.

 

[JohnM]

I'll scan the pages and post them here in a short while.

Thanks kindly @AndyPR .. my printer/scanner is down for the count since HP did a software update a while back?

On a related note, I do not remember the following on initial reading of MEGA petition as now posted ..

Has the study been funded yet?

No. We are planning to apply for funding in 2017 for the first stage of the study, setting up the world’s largest Bioresource of data and samples from CFS/ME patients. Our aim is to create a resource that all researchers all over the world can use. We will then apply for further funding for the subsequent omics-based stages of our study – searching for the biological basis to ME/CFS – once the Bioresource is set up.

Alarm bells ringing, maybe I'm being overly pedantic and/or it could be my tinnitus playing up again

1. The initial funding is only for the data and collection of samples, so there is no guarantee that further funding will be forthcoming for the 'omics-based studies?
2. Will multiple samples be taken at different time points from each participant?
   
3. Given past form, would be interesting to note which researchers will be allowed access to the bioresource, and under what conditions.

Are we looking at a further 2+ years (minimum) to get the bioresource set up, and before the 'omics can even happen .. if indeed it can happen, dependent on funding being in place?

Yep! Alarm bells ringing ..

 

[trishrhymes]

So it's all about setting up a massive biobank and lots of questionnaire data. That should use up the next decade nicely. And Crawley will have a lovely playground of questionnaire responses to do her p-hacking bad science on.

Then they might get around to doing some actual science if they can get the funding. I should be safely dead by then....

 

[daisybell]

Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients.
@batteredoldbook

The whole sorry mess in a nutshell!