Petition: Opposing MEGA

[charles shepherd]

Pwme are going to have to take legal action then, it's the only way they will ever listen to us! Someone needs to collect evidence of harms from GET and CBT, names, dates clinic etc, not just voting on surveys which they are clearly ignoring. Either that or a tv documentary exposing the PACE scandal and NICE's refusal to amend the Nice guidelines accordingly. I actually find it shocking that the NICE guidelines are not going to amended to exclude the use of GET and CBT in light of the PACE expose. They are ignoring the fact that these treatment do not work, cause harm and are wasting NHS money.

I agree Charles that many more doctors need to be involved, you are having to do far too much on your own. How do we get them involved?

Jan - If you look at the full MEA report on CBT, GET and Pacing (well over 200 pages) you will see that it contains a large section covering what people have told us in their own words about their negative or harmful experiences with CBT and GET.

Following the meeting at the House of Lords yesterday I said I would provide the Countess of Mar with a selection of some of these summaries from the MEA report which is, at present, the most detailed patient evidence we have on CBT, GET and Pacing

NICE already have a summary of the MEA report and we will be sending them the full report to coincide with the start of their surveillance review of the NICE guideline in 2017. There is no point in sending it while nothing is happening - otherwise it will just get sidelined and lost.

NICE are unlikely to take the re-analysis of the PACE data seriously unless it is published in peer reviewed journal - and I know that this is now being taken forward by AM but publication is likely to take some time. At the moment, and until hat happens, some of my medical colleagues just take the very cynical view that some of the PACE trial data has been released using an patient FoI, been analysed again using a different statistical approach and those involved have found some different results. You can do anything with stats if you try…..

Sadly, while there are a number of clinicians and researchers who are clearly interested in supporting people with ME/CFS through their clinical or research work, there are not many who are willing to also get involved with coalface advocacy involving the media, and problems with NICE, the DWP etc. And I think that this is highly unlikely to change in the near future.

I have discussed the PACE situation with health journalists (who all have far more health stories pouring in than they can cope with or print) and there just isn't any real interest at present in turning this into a major news story - which has to obviously appeal to people who do not have ME/CFS. I'm afraid there are no longer the number of health journalists around who want to tackle this sort of story. Much of their copy is now almost spoon fed via organisations like the SMC.

And I'm not personally convinced that 'legal action' is realistic (FoIs excluded) and I'm not sure what you mean by legal action…..

The ME/CFS charities could not put charity money into the pockets of m'learned friends - who cost a small fortune to employ - and a potentially very expensive court case when we may well end up losing

 

[eafw]

many more doctors need to be involved, you are having to do far too much on your own. How do we get them involved?

So as Jan says how do we get more doctors involved who can advocate for the ME community?
It seems that perhaps we need a two-pronged approach, funding going into bio research but also serious funding going into advocacy by medical professionals who will more likely be listened to by the medical establishment.

Yes, we need both - support the MEGA researchers, because as evidence appears from their work it will tell them more about the disease, the markers for inflammation or whatever, and when they start speaking about it it will be a strong voice on the side of understanding the physical markers and mechanisms. More research = more in academic and medical circles getting clued in to what is going on. AND, at the same time support for more "hearts and minds" advocacy along with a push for policy change (on NICE/GET etc).

Now, I know everyone is talking about Crawley and White, but if you gave me a magic wand and the choice to ditch them or replace Chowdhury/Afme I'd actually go for the latter right now. Because Crawley and White can't stop the science from coming through in the end, but anti-patient "advocates" are a big hindrance to the cultural shift we need.

We really need more pro-patient politics and campaigning around the everyday needs we have: the media, GP attitudes, decent clinics, disability and welfare, plus open communication and collaboration with good researchers, while debunking the bad. This is not taking away from MEA, forwardME, invest in ME, the supporters we have, and all the patient advocacy we already do, but it would be good to have more resources to direct to all this.

 

[Cinders66]

It could be argued that if the charities had taken a more robust approach in the past eg over ME vs CFS and endorsing stricter criteria, against wide umbrellas and NICE guidelines, over the NHS fatigue clinics with no physician consultant set up and on the pretty much total failure to try to research, treat and care for severe ME properly then we might Have more drs at both the clinical level and research level taking us seriously. Chronic Fatigue umbrellas don't work - trying to recruit interest from serious Drs (drs who could work in the field of stroke or MS etc) for the serious illnesses currently submerged in the UK MUS /CF/CFS umbrellas isn't going to work.
It's telling that 2 of our top researchers. Newton and Bansal run clinics. If consultNts outside psychiatrists aren't required to run pclinics but anyone can and no specialism is expected to provide a home for us and the rehab narrative is overly dominant ( as it is thanks to certain individuals) then it's not surprising Drs aren't interested.

In my area of uk we haven't been able to recruit a consultant.

I agree with eafw that AFME are the lame ducks and not the actions group we need.

 

[Keela Too]

Yes IMO. I didn't see clear demands in uk as USA had, there were fewer striking slogans and Bill boards,

Perhaps we have a less receptive audience, but I disagree. Many people including myself worked mighty hard to give effective demonstrations. The Belfast demo was in front of Parliament Buildings at Stormont, and some 25 or so MLAs came out to see what the fuss was about. Hardly an ineffective demo.

And nowhere in USA did I see someone standing naked asking for notice to be taken.

Please give credit to all those pushing for change, and remember that much of the real work has to happen with out fanfare, in the background.

 

[Cinders66]

Perhaps we have a less receptive audience, but I disagree. Many people including myself worked mighty hard to give effective demonstrations. The Belfast demo was in front of Parliament Buildings at Stormont, and some 25 or so MLAs came out to see what the fuss was about. Hardly an ineffective demo.

And nowhere in USA did I see someone standing naked asking for notice to be taken.

Please give credit to all those pushing for change, and remember that much of the real work has to happen with out fanfare, in the background.

The Northern Ireland one was probably great, there's an excellent long established group there I know who aren't afraid of being feisty. I looked at the USA ones and they were harder hitting very clearly in my view, no there wasn't a naked lady but personally I think a slogan demanding NIH stop neglecting CFS and highlighting institutional neglect was a better choice anyway. I've been an enthusiastic #ME action supporter and expected to love the UK joining in but it didn't seem as strong and effective a protest effort in Englabd and i have to reluctantly, without wishing to seem ungrateful for those involved who are great for even doing something like this, say that .

 

[Sasha]

We digress...

 

[trishrhymes]

Perhaps we have a less receptive audience, but I disagree. Many people including myself worked mighty hard to give effective demonstrations. The Belfast demo was in front of Parliament Buildings at Stormont, and some 25 or so MLAs came out to see what the fuss was about. Hardly an ineffective demo.

And nowhere in USA did I see someone standing naked asking for notice to be taken.

Please give credit to all those pushing for change, and remember that much of the real work has to happen with out fanfare, in the background.

I noticed with admiration the efforts of the Northern Ireland group in the reports of the MEAction protests. It was great to hear of politicians being made aware of the situation. Other groups around the UK did well with their demonstrations too, judging by the pictures. I don't think it's fair to criticise people who are doing their very best against such difficult odds, especially in the UK where politicians and the media have been so heavily influenced by the BPS people.

Like everyone else, I always wish for more, but doing so by criticising the very people who are trying to do something seems unfair. We can each only do our little bit. All I could manage was a letter to my MP which was received with a disdainful dismissal.

 

[trishrhymes]

We digress...

You're right, sorry. I sometimes forget the heading of the thread when I join in a conversation.

 

[AndyPR]

1381 supporters

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Cinders66]

I noticed with admiration the efforts of the Northern Ireland group in the reports of the MEAction protests. It was great to hear of politicians being made aware of the situation. Other groups around the UK did well with their demonstrations too, judging by the pictures. I don't think it's fair to criticise people who are doing their very best against such difficult odds, especially in the UK where politicians and the media have been so heavily influenced by the BPS people.

Like everyone else, I always wish for more, but doing so by criticising the very people who are trying to do something seems unfair. We can each only do our little bit. All I could manage was a letter to my MP which was received with a disdainful dismissal.

I'm not criticising to bring people down I'm saying what I feel - as I did on here prior to the events and on the facebook to give my opinion, as being bedbound I'm reliant on things changing with speed in uk for any hope of a Life. If I could have participated I would, I do what activism I can too which isn't enough either. The UK BPS situation and the hostile audience, to me are irrelevant in constructing the basics of a protest. As i say I'm not trying to be negative but pretending , as it would be, that I thought it was radical & effective In England enough isn't going to bring about more effective ones if there's a round 3. But this is off topic. My original off hand couple of lines where I mentioned this was just saying that, unlike the USA, our #MEaction isn't yet a strong driving force mobilising patient action for change which is what we are sorely lacking over here in England at this time especially with a lot to take action on. Maybe it will grow to be that.

 

[Simon]

there is still an awful long way to go when it comes to changing the minds of what might be termed the UK 'medical establishment' on ME/CFS

Example here:

http://forums.phoenixrising.me/inde...-differently-to-us-says-nice-spokesman.47568/
NICE are holding back the review of their guidelines on ME/CFS until some time in 2017, saying the evidence to justify earlier reconsideration isn’t strong enough.

“It is not really for the NHS to respond to a report commissioned in another country and not yet examined by its commissioner”, the agency’s director for clinical practice wrote to colleagues as they were assembling their reply to a FoI request from Robin Ellis.

Professor Mark Baker wrote: “We would take seriously the views of the relevant esteemed medical associations in the UK, principally the RCP (Royal College of Physicians) and the RCPsych,(Royal College of Psychiatrists) when looking at reviewing this guidance.

This is a huge problem. And frankly, the only way to ultimately displace the psychosocial model that sadly dominates the UK medical establishment view is to find the biological cause. MEGA could help with that in a huge way: it's applying leading edge technology (used in many, many other diseases - we need our turn) on a huge scale.

And if there is a difference, whoever is in charge will travel the world saying that they have discovered the biological basis of ME.

 

[Simon]

1. MEGA is basically a good idea.

Thank you for the broad support in principle. Re your reservations:

. I suspect a cohort of 1000 ME cases would be about right but I may be wrong.

I don't know about the other types of omics but genomics in particular requires very large samples and 1,000 would not be big enough for that. Chris Ponting (Genomics prof) posted quite a bit on this, saying you won't know the exact size needed til the results are seen, but 10k seems about right
eg here and here

3. What may be achievable through debate is a considerable contribution to making the methodology sound. The necessary improvements may happen anyway. The geneticists may well point out that collecting patients from NHS clinics is not good enough in terms of selection bias and insist on a population based cohort. If they don't we can at least try to bring it to attention

...We want at least Biobank epidemiological standards.

Could you expand on this? I know the biobank recruited quite a lot of patients direct from NHS clinics. I'm also not sure how easy it is for GPs to diagnose (AFAIK, apart fromrunning blood tests, GP diagnosis wasn't independently confirmed), particularly at scale.

What I'd really like to see is an open discussion on this (happy for it to be closed if biobank and other mecfs researchers are involved) to sort out the isses.

And if there is a difference, whoever is in charge will travel the world saying that they have discovered the biological basis of ME. I would like to see that.

I would love to see that too.

 

[JoanDublin]

Example here:

This is a huge problem. And frankly, the only way to ultimately displace the psychosocial model that sadly dominates the UK medical establishment view is to find the biological cause. MEGA could help with that in a huge way: it's applying leading edge technology (used in many, many other diseases - we need our turn) on a huge scale.

As MEGA is structured at the moment there is absolutely no way I could support it. I would be betraying everyone who has fought long and hard against the BPS model and the psychobabblers that have perpetuated it. Let's leave that aside for a moment.

I am 100% supportive of biomedical research. I want to be absolutely clear on that. However the latest FOI information exposing the UK's insular attitude towards 'foreign' research is absolutely appalling but nonetheless indicative of the hold these people have in the UK. You can bet your last dollar that the redacted advisor was a psychobabbler and most likely one of several already mentioned on this thread.

Why won't MEGA approach Invest in ME to build an alliance with them and build on the research ALREADY underway in the UK? Good quality research, supported by patients, organised by patients and with a history of excellent international collaboration?

Can anyone answer me that? Maybe @charles shepherd ?

 

[Jan]

Example here:

This is a huge problem. And frankly, the only way to ultimately displace the psychosocial model that sadly dominates the UK medical establishment view is to find the biological cause. MEGA could help with that in a huge way: it's applying leading edge technology (used in many, many other diseases - we need our turn) on a huge scale.

MEGA results will be so far into the future. How many more will made permanently disabled through following the NICE guidelines? How many more will have died? So can I ask, do you think that no change will be brought about even after the PACE reanalysis data has been published?

 

[lilpink]

This doctor regards ME/CFS as an MUS (medically unexplained syndrome) along with IBS etc and was very reluctant to agree to the WHO classification…..

A Professor of Neurology, Peter Goadsby, wrote a letter in 2003 to the Journal of the Royal Society of Medicine addressed to Simon Wessely & Dr Page in which he takes issue with the promulgation of the MUPS/MUS overarching diagnosis & warns about its misuse. Unfortunately not enough doctors are brave enough to make this stand & there is a dearth of such reasonable criticism. If people have been fighting against MUS from the 'inside', where has it got us in 13 years? The powers that be will always have their way. For example, in this week's Academy of Medical Royal Colleges 'Choosing Wisely' list of unwise interventions for patients, there was no mention of 'mindfulness' as an unwise treatment in the Royal College of Psychiatrists (RCPsych) submission. From a February 2016 RCPsych ‘Choosing Wisely’ document the Royal College (of which Simon Wessely is President) “performed a survey of all UK-based college members to obtain your [their] views about which tests and interventions should be on the list. They received a high volume of responses to the survey….”


The College goes on to say that “ This survey also created concern, in particular mention must be made about the inclusion of Mindfulness on this list, for there is a very clear and ample evidence base supporting its use” .



Apparently MANY psychiatrist members of this Royal College do not agree but THEIR views have been overruled and effectively suppressed from the inside.



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539555/

 

[lilpink]

This thread is doing what threads in an old jumper can so often do: meander and get rather knotted and out of alignment.
OMEGA doesn't want to shut down biomedical research. OMEGA does want to dismantle 'MEGA' because MEGA to its very bones is tainted with BPS/ Wessely School bias. Rather like panning for gold, amongst the list of MEGA personnel there may well be clean shiny pieces of gold, decent researchers, whom the ME patient population would be happy to see involved in studying their disease. But when panning you lose the dirty tainted stuff... the stuff which has no value... and you leave the structure ( the 'stream', to continue the analogy) behind you.
Thus to be assured of the cleanest, safest most reputable research MEGA should be dismantled and, if funding is available, in its place we should install the best people... overseen by a committee of the most decent. My own preference, and I appreciate he is a clinician (and this is entering 'dreamworld' territory) , would be to see Nigel Speight in a governance role. I cannot imagine another man who has involved himself in the ME world who possesses greater integrity and decency. I dare say he is looking forward to a relaxing retirement, but he is the calibre of man the grass roots patients who are au fait with ME politics would feel happy with. A safe pair of hands. Something greatly needed in UK ME research, so too in panning for gold.

 

[Jo Best]

I've not been on here for a couple of days so m plyaing catch up and trying to get brain in gear. @lilpink , are you saying that Mindfulness therapy was on the list of unwise interventions drawn up by the RCPsych college members, even high on the list perhaps, and SW or his colleagues at the RCPsych have silenced these psychiatrists from having their say?

 

[charles shepherd]

As MEGA is structured at the moment there is absolutely no way I could support it. I would be betraying everyone who has fought long and hard against the BPS model and the psychobabblers that have perpetuated it. Let's leave that aside for a moment.

I am 100% supportive of biomedical research. I want to be absolutely clear on that. However the latest FOI information exposing the UK's insular attitude towards 'foreign' research is absolutely appalling but nonetheless indicative of the hold these people have in the UK. You can bet your last dollar that the redacted advisor was a psychobabbler and most likely one of several already mentioned on this thread.

Why won't MEGA approach Invest in ME to build an alliance with them and build on the research ALREADY underway in the UK? Good quality research, supported by patients, organised by patients and with a history of excellent international collaboration?

Can anyone answer me that? Maybe @charles shepherd ?

Joan

Could I suggest that you have a look at the PRELIMINARY information, including the Qs and As and Profesor Chris Ponting's blog, that has been provided by the MEGA planning group on what they are proposing to do with this 'big data' -omic study - rather than me repeating all this information yet again

The planning group is NOT made up of people who support the psychosocial model of causation of ME/CFS and this is NOT a psychological or psychiatric study

In very simple terms, MEGA will require a very large number of people (we can debate the numbers - Chris Ponting wants 10,000 whereas others like Jonathan Edwards think it can be done with fewer) who have been given a diagnosis of ME/CFS.

The participants will will then have their blood samples analysed using all these new technologies (genomics, metabolomics, proteomics, epigenetics) etc to see if there are abnormalities, or patterns of abnormalities, that match symptoms and fit in with the various diagnostic criteria for ME, CFS and ME/CFS (that currently cause so much confusion)

So it is a biomedical study that could provide us with some really useful information on diagnostic biomarkers (that we do not yet have) and possibly causation factors - as well as clues about new drug treatments that might be worth trying

This is why I am fully behind the AIMS of the MEGA study but do have concerns about some aspects of the protocol

As far as supplying patients for the study, the ME/CFS charities have a rather limited role to play here. Anyone entering the study will have to have a very careful clinical assessment and examination - so MEGA cannot simply recruit members of a charity who say they have ME or CFS or ME/CFS.

The big exception here is obviously the 500+ people who have donated blood samples to the ME biobank - where we have collected very detailed clinical information regarding which diagnostic criteria the participants meet. The ME Biobank also has samples from healthy controls, people with severe ME/CFS and people with another neurological illness that causes chronic fatigue - multiple sclerosis

What we do not have in the ME Biobank is samples from people who meet NICE diagnostic criteria for CFS but do not meet Fukuda or Canadian criteria for ME/CFS

And this is another powerful reason for doing a study of this type - as it may also produce some biomarkers which are present in well defined ME/CFS but not present in the much broader NICE definition of CFS

With regard to the Rituximab trial - if the proposal to set up a small UK clinical trial fails to start work before the results of the phase 3 clinical trial from Norway are announced (hopefully later next year), and these results from Norway are encouraging, then I think there will be a very strong case for setting up a large phase 3 type clinical trial here in the UK. This would obviously cost a huge of money and is something that the CMRC has discussed. Based on this discussion at a CMRC Board meeting earlier in the year, I think there would then be strong support from the CMRC for setting up a large phase 3 clinical trial (possibly funded by MRC) here in the UK and I don't see why this could not be done in conjunction with the charity sector (as the MEA has done with the mitochondrial function study being carried out by Prof Anne McArdle et al in Liverpool).

 

[charles shepherd]

MEGA results will be so far into the future. How many more will made permanently disabled through following the NICE guidelines? How many more will have died? So can I ask, do you think that no change will be brought about even after the PACE reanalysis data has been published?

If the people involved in the re-analysis of the PACE trial can manage to get this re-analysis into a paper that is then published in a reputable peer reviewed journal, then the results will have to be seriously considered by NICE if they decide to carry out a 'surveillance review' in 2017 - which may, or may not then lead to an update of the NICE guideline on ME/CFS later in the year

Following the meeting at the House of Lords yesterday,y we are going to seek clarification from NICE as to what is being proposed here - because it is still far from clear from the FoI correspondence

Please remember, as I have pointed out on numerous occasions, that the NICE guideline on ME/CFS was published in 2007 - well before the PACE trial results were announced.

Their recommendations on CBT and GET in 2007 were based on all the other clinical trials involving CBT and GET.

All that has happened since then as far as NICE is concerned, is that the PACE trial results (as published in The Lancet) etc support the position they have taken on CBT and GET

 

[Cinders66]

Example here:

This is a huge problem. And frankly, the only way to ultimately displace the psychosocial model that sadly dominates the UK medical establishment view is to find the biological cause. MEGA could help with that in a huge way: it's applying leading edge technology (used in many, many other diseases - we need our turn) on a huge scale.

I disagree here. There's a bias and prejudice within the uk system that Isn't fair. We need to strongly challenge that now, with the tools - PACE trial reanalysis , IOM report - we have, not be half resigned to waiting 5 years until MEGA proves something. If PACE trial has weak results, what evidence is there FOR the PS model , it has disproved itself- it's just assumption - and how does it stack against increasing evidence from the rest of the world? If NICE Do take a biased approach in the upcoming review then we really need a strong patient reaction against it.
However MEGA, if done well, might help I agree, eventually, but we cant Ignore that fact that people like Esther Crawley and White are the very ones muddying the ME/SEID water with a weak CFS and stoking the flames of the CBT model approach to this illness, and their accepted presence in MEGA and the CMRC legitimise that.