Petition: Opposing MEGA

[slysaint]

However, out in the real world, most of these NHS services take a rather more pragmatic approach to management and many of them do actually offer a fairly sensible approach to activity/energy management based on pacing rather than a dogmatic GET approach that is based on the seriously flawed inactivity and deconditioning model of causation

If this is true then it's a shame that they keep this to themselves rather than telling the powers that be, that GET as it stands, is the wrong treatment.

 

[trishrhymes]

These are essentially my thoughts, as expressed in my email to Dr Holgate.

Normally, bodies associated with research divide into clear groups: Academic Societies like British Society for Rheumatology; Charities, like Arthritis Research UK or IiME which fund research; Government funding bodies, like MRC or NIHR; and research investigators who are grant applicants and holders. There have probably always been instances where distinctions are blurred but it seems to be more common now.

In the past the normal way for academics to set up a body to promote research into an area would be to set up an academic (learned) society. Membership would be open to all in many cases although it might be reserved for members of a profession or even by election like the Royal Society. Such a body would not give out research funds (beyond bursaries for travel etc.) nor apply for them.

The CMRC appears to have taken on the functions of all these different types of body in a way that certainly raises conflict of interest issues. I think this is a serious matter and my understanding is that Richard Simpson of IiME may be taking it up with the MRC, who somehow also seem to be involved.

What I think ME research in the UK needs is not a CMRC but an open ME Research Society that fosters research but is not involved in funding issues. The problem is that such a society would normally be set up by physicians with an academic interest. Unfortunately, up until recently prominent physicians with an academic interest appear not to have understood either what is good science or what is conflict of interest. The main reason why researchers are likely to be put off studying ME is, apart from the fact that it is a very difficult problem to study, that the field has been dominated by bad science and political game playing by bad scientists. A clean break is needed but I doubt it will come from CMRC, which will wither on the vine with time because infighting will develop. Maybe then the UK will be able to join the international academic community.

Thank you @Jonathan Edwards for clarifying the position. Would it be possible for your comments - this one and your earlier reply to Dr Holgate - to be distributed to all members of the MRC, CMRC and MEGA groups, perhaps by @charles shepherd?

I think this needs to be sorted out openly. If it means the laying down of the CMRC, and a return to the MRC having an expert advisory group that I seem to remember @charles shepherd was part of and preferred, that would be a good thing.

I assume such an advisory group would not and must not include anyone who would be involved in bidding for MRC funding. If anyone, including Esther Crawley then want to put together a group of researchers and apply for funding for a MEGA style project in the peer reviewed way, this could be done without a conflict of interest and other applicants such as those researchers currently funded by the charities could apply on a more level playing field.

 

[TiredSam]

If this is true then it's a shame that they keep this to themselves rather than telling the powers that be, that GET as it stands, is the wrong treatment.

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.

 

[eafw]

This would suggest that there are now further documents "behind the curtain", as the saying goes.

Nowhere does it state what members shall and shall not do or what sanctions may be imposed in a case of breach.

It doesn't say anything about the executive either, how they are appointed or finances are organised. Nothing about oversight, or accountabilities, conflicts of interests, complaints. There ought to be documentation about all this.

On one level it seems very amateurish, yet I think it is very deliberate. Completely unacceptable mind, especially considering the money and influence they are seeking to gain for themselves using this "collaborative" as a vehicle for that.

 

[Sidereal]

Some need cbt and get, some just need get and some just need a good shake and a kick up the arse. But just in case at some point in the future the biomedical proof for this very important disease comes out, we would like to state on record that we believe this is a biological illness.

I'd give you 1000 likes for this post if I could. I feel like something really sinister has happened since White retired and they were forced to release the PACE data. They've completely changed their tune - in public - about this being a 'biomedical' illness, with Crawley now being the point person for this new & improved version of BPS, but in reality they're still claiming PACE is a 'great, great study', giving people CBT/GET in their clinics and doing more studies of CBT/GET. These viewpoints are simply not compatible. If you think PACE is a great study then you are not a scientist. If you think CBT/GET is a treatment then you do not think this is a biological disease. Holgate's email was also quite troubling in that he appeared to be using White's retirement and supposed lack of involvement in MEGA as a selling point, something to appease the masses with. I don't care if one individual retires if their ideas and treatment practices are simply carried on by others like EC. As @Woolie astutely pointed out, the sales pitch for MEGA was that this is a biological condition blah blah but the purpose of the study is to identify responders to treatment so we can better target the treatments... meaning EXISTING treatments i.e. CBT/GET and 'a good shake and a kick up the arse', as you say.

 

[slysaint]

I don't care if one individual retires if their ideas and treatment practices are simply carried on by others like EC

All the while SW the puppetmaster continues to reign supreme.

 

[trishrhymes]

All the while SW the puppetmaster continues to reign supreme.

I think the metaphor puppet master for Wessley is apt. He does seem extraordinarily adept at hiding behind the scenes pulling the strings, and when one puppet retires, he has manufactured (brainwashed) plenty more to take their place.

 

[aimossy]

"Great great study" - next minute she will be saying she is building a wall and that she is excellent at research - so good she won't even need data.

 

[Keith Geraghty]

It was obvious to me from the inception of the CMRC that there would be problems in the future. Prof. Holgate's email to Simon Wessely and his subsequent response calling for 'a sprinkling of psychologists' was telling. My own personal experience of finding it almost impossible to join, then membership meaning nothing tangible per se, showed me that the CMRC was not an inclusive tent at all. - its a bit like 'more of the same, with a new hat'.

MEGA is promoted without details of what it will actually involve - I would argue it should be designed and then there should be a consultation process and then the CMRC should come to the patient community to seek support. - however given Esther Crawley's recent statements and trials on kids with CFS (eg the Lightening Process and FITNET) I dont think she is the right person to head up any large biomedical study of ME/CFS.

I agree with Prof. Edwards, the closeness of the CMRC to the MRC may blur a line in conflict of interest - the CMRC has direct access to the MRC - I have no problem with promoting science, but I have a problem with Prof. Holgate and Esther Crawley asking us all to support them as funds are awarded to Esther Crawley in Bristol. She has had more than £3.5 million in funding - I know of two other established researchers who applied to the MRC for funding to do biomedical studies and they were turned down - they didnt have the CMRC behind them and access to the MRC.

I want scarce research funds to be allocated fairly - what is fair in assisting Esther Crawley to get a £5 million pound MEGA trial. Dont forget she calls PACE "a great great trial", she has previously said some parents sustain illness beliefs in children with CFS and she seems to know very little about the pathophysiology of the illness - she believes re-setting sleep patterns resets the HPA axis and brings about recovery - this seems to be the level of her biomedical knowledge, simplistic, basic, narrow, lacking in wider insight or more advanced scientific knowledge. She is not qualified to lead MEGA in my opinion and is tarnished by her disasterous statements in the media about the illness -- if MEGA is to go ahead, someone new, an expert, with no history of patient acrimony, needs to take charge. Then we need to go through the process I described above and in the interests of fairness Prof. Holgate needs to start supporting all UK ME/CFS researchers, not just those people Simon Wessely points him towards.

I have found it much easier to make links with ME/CFS researchers in the US, I have found US researchers much more open and generous with time and assistance. I was offered an NIH grant to attend the recent IACFS/ME conference in Florida, but unfortunately I was unable to attend and recently I have become an editorial board member of the Journal of Fatigue, Biomedicine, Health and Behaviour.

It is very telling that Dr Nacul at the London School of Hygiene had to go to the US to get an award to fund his virus study, is Prof. Holgate and the CMRC working for people like Dr Nacul or me, to help us get funding? The fairness soon evaporates when you look at these examples. I have submitted my first grant applciation to the US and I co-wrote a second application to the US - this situation exemplifies everything that is wrong with the UK ME/CFS research environment and the CMRC.

Big doesnt mean better - the PACE trial was the biggest ever RCT in ME/CFS - we all know how that turned out. Lets not waste another £5 million.

 

[Jo Best]

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.

 

[user9876]

Please excuse my ignorance, but could someone please tell me the remit of the CMRC? Do they decide what research needs to carried out? Do they allocate research funds or pass on recommendations to the MRC? What else do they do?

What exactly has the CMRC achieved since it was established? I don't mean that sarcastically, I genuinely would like to know what has actually been happening over the last decade.

Because sadly, out here in the REAL WORLD, patients are suffering, patients are struggling, patients have no doctors to turn to and face disbelief when they do try. Patients are losing hope, patients are taking their own lives, and patients are dying!! This is the REAL WORLD, not the research world of well paid doctors, not the CMRC or any other bloody organisation.

Some have lost sight of what the REAL WORLD is. It should not be about politics or proving your theory is right.

So Mr Holgate and co, don't feign ignorance of why ME patients are anti your MEGA proposal, it insults us even more. Enough patients (nearly 3000) have signed the OMEGA petition now for the 'minority' card to be put to bed. 12,000 asked for PACE trial results to be released, yet you insult those 12,000 by denying the shocking reanalysis results. It's a national scandal, which has had international implications, but still you support it. It's truly sickening.

They have no official status but they do have backing and some funding from the MRC and obviously they have senior members of the committees involved in approving MRC funding on board. They are also pushing forward their own research agenda and they may even eventually get their act together and apply for a grant for MEGA.

I think the government should be very concerned about this type of anti-competitive club around research funding. They seem to be in a position to be highly influential in blocking things as well as applying for their own grants. Given they seem to have selective membership and that they clearly will back bad research from members whilst keeping out those who will point this out this should be concerning. The notion that the 'vet' members suggests that this is or could be the case.

We complain about lobbying groups for MPs but this is a way of a group of researchers trying to control the research agenda and get themselves a bigger slice of the pie. Given the MRC seem to not want any form of democratic accountability (i.e. avoiding scrutiny of their review processes) this is bad.

 

[JoanDublin]

Just posting the OMEGA petition link here again in case anyone else wants to sign it

https://www.change.org/p/opposing-m...twitter&utm_campaign=share_twitter_responsive

 

[Sidereal]

If we exclude the 5 studies in 2012, after their arms were twisted by parliament

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.

 

[Ysabelle-S]

Keith, good luck with the grand application in the US! But what a comment on the UK state of affairs that you and Dr Nacul had to apply there for funding. The wrong people have a stranglehold on ME in the UK, to the detriment of science, and the well being and basic human rights of the patient community.

 

[trishrhymes]

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'm still running to catch up with the back story of ME research in the UK. Can anyone point me in the direction of info about the 5 biomed studies?

I agree it's odd that people who claim to no nothing about ME/CFS are wanting to study ME, however, look at what's happened when the people who do claim to know about it get all the funding (PACE, MAGENTA, FITNET etc.)

I think the problem at the moment is not that biomed scientists in genomics, metabolomics etc are interested in working on ME.

The problem comes when they turn to the bad guys to supply them with patients to study and they end up with a bunch of fatigue patients. If we could get a properly defined patient cohort such as that collected by the current biobank, then by all means encourage the biomed scientists to do their stuff as part of the process of learning more.

 

[batteredoldbook]

So pace is a dead cat. CMRC is a dead duck. And MEGA's a dead parrot. What are you guys feeding?! Stop feeding my pets!!!!

 

[Jo Best]

So pace is a dead cat. CMRC is a dead duck. And MEGA's a dead parrot. What are you guys feeding?! Stop feeding my pets!!!!

And we have a big circus tent full of clowns and escapologists.

 

[slysaint]

And we have a big circus tent full of clowns and escapologists.

But they're all still ignoring the elephant.

 

[Jo Best]

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.

I agree and would add that's why the Let's Do for ME campaign was launched a few months after the debate / announcement, to raise funds for the Invest in ME Research Centre of Excellence translational biomedical research strategy. The hope (ever hopeful) was that raising the initial funding target of £100k for specific research (the foundation study on the role of the gut in ME) would send a strong message to government, MRC etc. about the kind of research we want and that we are prepared as a patient/carer community to put our money where our mouths are. That didn't happen (or rather perhaps it did) as the CMRC was set up and we're still faced with needing to break the stranglehold of the BPS lobby all dressed up in their new 'biomedical' clothes.

Although this took a great toll on Jan Laverick's health, she nevertheless co-founded the Let's Do It for ME awareness and crowdfunding campaign for the Invest in ME Research Centre of Excellence a few months later, launched the very same weekend that Radio 4 launched the ME-activist-patients-are-dangerous-terrorists media frenzy. Here's the Let's Do It for ME website - http://ldifme.org/

From this post - http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-50#post-787095

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.

Contrast that with the annual international Invest in ME Research Conference and Colloquium.
http://investinme.eu/index.shtml

 

[Sidereal]

I'm still running to catch up with the back story of ME research in the UK. Can anyone point me in the direction of info about the 5 biomed studies?

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