Petition: Opposing MEGA

[Simon]

There are something like 250,00 with the condition in the UK and about 20,000 at the NHS clinics. A fraction of them are here, or even know about the whole sorry history. Any unity against MEGA is confined to a tiny proportion of the patient population as a whole.

Sadly, I think that's right: we forget we live in an echo chamber and most patient don't have the info we share here. 12,000 patients, researchers and friends sighed the petition against PACE, maybe half from the UK, so maybe 5k patients at best. about 2% of the whole. The anti-MEGA petition is up to 1,350, still a tiny number. I think that's very important too when people are saying 'smart patients will stay away from clinics, so clinic samples are very biased': the numbers don't add up.

The CMRC will not get rid of them on our say-so. There is a good chance however to make the case to tighten up definitions and patient selection. Those are things we can press for, without ditching MEGA completely. BPS will find themselves slowly sidelined as the science comes forth

Agreed. Especially the bolded bit. BPS will survive in some form until biological science can find the real cause(s) of our illness. MEGA, with its huge sample and leading-edge technology, can help do that.

The communication has been dreadful, but that money if not going to MEGA is not going to be coming our way for other projects. We lose it .

Again, that's true, particularly as MEGA are applying to the Wellcome Trust who have never funded mecfs research - not a single grant. If MEGA does get funded, it might encourage them to invest in mecfs more generally. If MEGA doesn't get as far as applying (and Wellcome have apparently encouraged MEGA to apply), then I don't think there's any reason to think they will hand out funds to anyone else.

 

[Esther12]

Using your analogy, just how are you going to achieve this excision ? This is not a rhetorical question, I would like someone to paint a scenario for me ...

us: we hate crawley, sack her (nicely written, referenced and signed by important people)
them: oh, OK then

Not a chance.

We don't know what's possible. We're in a really unusual situation and I don't think anyone knows how different approaches are going to play out.

Those currently in power are going to do everything they can to indicate that patients threatening their interests are engaging in a foolish, destructive and doomed campaign. And they will go on doing that right up until the point when they're forced to give in.

To me, it seems that on PACE they've been reduced to relying on bluff and bravado from authority figures. That seems unsustainable to me, particularly now academics outside of the UK have started to take an interest. When the PACE spin collapses, what else will fall? I don't know. Getting rid of those like Crawley, or at least almost completely side-lining them, seems a possible outcome.

Radical change in the UK is going to be resisted, and we may not be able to achieve it, but I think that it's a worthwhile, and not impossible, target.

 

[eafw]

If George Davey-Smith woke up tomorrow and found that their was NO support from the ME community and that the charities were looking to find researchers who could collaborate internationally (perhaps US/Norway) and direct funds there how would he feel about how relevant his research will be given that it is now in support of the status quo that brought us PACE?

He wouldn't care less. All he needs are large numbers of people and the NHS can give him that. His career will do just fine without us.

it's just maybe possible to ignore NHS et al and seek private funds -- not overnight but I don't see any fast benefits from MEGA either.

The UK does not have the same structure as the US for raising money, we don't have large independent private funders. Supposed independents like the Wellcome Trust are very much "establishment", (and of course EU funds are down the toilet now thanks to the brexit turkeys). Universities, government and NHS have a lot of power here - and the ability to draw on huge networks of people. Perfect for big data.

 

[jodie100]

And just who's studies were these eh?

Ironically ( and just as an example of how the whole debate seems to have become overly polarised) they were not by anybody you might initially think but by Dr. Leonard Jason (and others), who seems to be favourably regarded in the M.E. community generally. e.g. one of Dr Jason's studies referred to in the review can be seen here
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4215640/

 

[Keela Too]

There is an UK #ME action but , I don't know if it's just being British, but the campaigns so far they have run just aren't in the American feisty plain speaking, assertive mould, which hasn't ruffled the feathers it could have this year

I didn't notice the UK Millions Missing being less feisty than US ones. Did you?

 

[Jonathan Edwards]

As I see it:

1. MEGA is basically a good idea. The numbers may be overambitious and unnecessary. I suspect a cohort of 1000 ME cases would be about right but I may be wrong. Otherwise the idea of screening for genetic and metabolic differences between ME and controls has to be welcome.

2. The MEGA team are planning to set this up and it is very unlikely that dissenting voices will stop them. There is a reasonable chance Wellcome will fund.

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.

4. I cannot see that researchers' favourite hypotheses are going to impact on the outcome in reality. Whether they favour a psychological base or a metabolic base, if a difference is found in the metabolic profile nobody is going to bury that, because positive data mean publications and publications outweigh all other motivations here.

So I think we end up with the old saying - you play the ball not the man (or woman). We want at least Biobank epidemiological standards. Then blood samples get drawn and tested and unlike for questionnaires the results are spewed out by a machine without any subjective bias. 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.

 

[BurnA]

whoever is in charge will travel the world saying that they have discovered the biological basis of ME

Would EC say that - haha it would put her in a very odd position, taking credit for research which shows all her previous scientific research is fundamentally flawed.

 

[JoanDublin]

As I see it I think the only way of breaking the BPS hold over ME is that someone or someones are going to have to take a legal case for damages against them. I would raise funds for that. There are a number of angles that could be used from outright harm caused by their fraudelent PACE 'outcomes' to human rights abuses caused by others on many levels including abuse of children etc. I know it would be complicated but it feels to me that the time has never been more right for this to happen. And if this is gonna be done it better be done before Brexit because once that happens you may forget about people in the UK who have ME. These loons who are running the show will be completely insulated and there will be no higher EU court to challenge them in

 

[Jan]

As I see it I think the only way of breaking the BPS hold over ME is that someone or someones are going to have to take a legal case for damages against them. I would raise funds for that. There are a number of angles that could be used from outright harm caused by their fraudelent PACE 'outcomes' to human rights abuses caused by others on many levels including abuse of children etc. I know it would be complicated but it feels to me that the time has never been more right for this to happen. And if this is gonna be done it better be done before Brexit because once that happens you may forget about people in the UK who have ME. These loons who are running the show will be completely insulated and there will be no higher EU court to challenge them in

Agreed, I can't believe that nobody has sued for damages yet, or at least attempted to. So many people have been seriously harmed by GET & CBT I would happily donate.

 

[Aurator]

Again, that's true, particularly as MEGA are applying to the Wellcome Trust who have never funded mecfs research - not a single grant.

They do fund a book prize, though, which this year was awarded to Suzanne O'Sullivan for a piece of popular science writing that was very careless of the science, or even the facts, relating to ME.

We may welcome the Wellcome Trust's money, but can we entirely trust their motives for sponsoring MEGA, if they do?

 

[charles shepherd]

I am only recently back (mainly because trains were in chaos at Paddington tonight) from a full day of meetings in London - one of which was at the House of Lords with the Countess of Mar where we again discussed what further action should be taken to try and persuade the 'top dogs' at NICE (ie Prof Mark Baker) and NHS England (ie Dr Martin McShane) that we need a thorough root and branch review of the 2007 NICE guideline on ME/CFS

We also discussed the MEGA study and the PACE trial re-analysis

So I've only had time to quickly skim through some of the further comments on MEGA here that have been posted here over the past 24 hours

Whilst accepeting that there have been some important developments (e.g. the PACE FoI and resulting re-analysis of data) in trying to dismantle the psychosocial model of cause and management of ME/CFS, 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

To take a couple of examples from what happened today on what is happening out there in the real world and well away the ME internet village:

Have a look at this exchange of correspondence involving NICE, NHS England and the Countess of Mar relating to the NICE guideline revision - especially some of the statements on the current status of UK and international research and the sources of information/guidance (e.g. Royal College of Psychiatrists) that are used by NICE and NHS England when we raise critical points about the NICE guideline with NICE

NICE guideline FoI:
http://www.meassociation.org.uk/201...eedom-of-information-request-24-october-2016/

But the main part of our meeting today was with the new chief medical officer at Capita - the organisation that carries out medical assessments for the DWP

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…..

So there really is a long way to go with changing minds at the top of the UK medical establishment

And sadly there aren't many docs like myself who are actually willing to sit down at meetings with organisations like NICE, NHS England, DWP, MRC, CMRC to argue the case that this is a serious and disabling neuroimmune disease

What would really help me (and the ME patient community) is to have MORE docs who were willing to get involved 'at the coalface' with the people who really have power in the UK medical establishment - rather than being told to resign/leave the Board of the CMRC (where I/we would not be replaced)

Would it really help if the MECFS charities all said they weren't going to join working groups set up by these bodies to deal with ME/CFS issues (another e.g. - the fluctuating conditions group at the DWP)

This approach of opting out of joining groups where there are people you disagree with is not the answer and I am not going to be resigning from the CMRC.......

 

[Dr Speedy]

It's more than disagreeing Charles I'm bedridden thanks to those idiots and their harmful treatments and I will never get my health back if it's up to them

 

[Jan]

So it's just getting worse and even more depressing

 

[Jan]

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?

 

[PhoenixDown]

these people have and are promoting CBT and GET as solving the cause of CFS - correcting the underlying false illness belief, the fear of movement, the deconditioning, the preoccupation with oneself.

3.50 There have been so many zealots thinking that their idea is the cause

@3:50 - 22% of adults recover with the best treatment – is that best treatment suppose to be GET a la the PACE trial because I've got some bad news for him if it is. They never recovered and 10% from the control group did just as well under that same distorted definition of recovery. He goes on to say treatments don't get to the underlying cause but that doesn't excuse showcasing bad science as fact.

 

[slysaint]

people you disagree with

You may not have been following another thread on Prof Esther Crawleys research projects, but I and others are bewildered as how such 'studies' get such credibility and who reviews them.
http://forums.phoenixrising.me/index.php?posts/778643/

this was an interview she gave 2012; "What is Chronic Fatigue Syndrome"
http://www.thenakedscientists.com/HTML/interviews/interview/2097/
""
Kat - Who normally gets this disorder because I remember when it sort of rose to prominence, a couple of decades ago, people referred to it as “yuppie flu”, but I understand that's not actually really the sort of people that it affects?

Esther - Well, it can affect everybody. It tends to be more common in women. In fact, it tends to be more common in those of lower socio-economic class, so more deprived families. And there's reasonable evidence now that it’s also, certainly in this country, it’s more common in ethnic minorities. And you can look for this condition everywhere and every country that you look for it, you're going to find it, and the poorer the country, the more common it seems to be. So, in fact, it’s quite the reverse of yuppie flu. It’s an illness of social deprivation not of wealth. It’s just the yuppies, the rich people are more likely to be successful in seeking healthcare."

and this was last year
http://bmjopen.bmj.com/content/5/10/e008830.full
And she is regarded as an expert on ME/CFS epidemiology and genetics and will no doubt take a lead on the MEGA project.

 

[Esther12]

Whilst accepeting that there have been some important developments (e.g. the PACE FoI and resulting re-analysis of data) in trying to dismantle the psychosocial model of cause and management of ME/CFS, 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

To take a couple of examples from what happened today on what is happening out there in the real world and well away the ME internet village:

Have a look at this exchange of correspondence involving NICE, NHS England and the Countess of Mar relating to the NICE guideline revision - especially some of the statements on the current status of UK and international research and the sources of information/guidance (e.g. Royal College of Psychiatrists) that are used by NICE and NHS England when we raise critical points about the NICE guideline with NICE

NICE guideline FoI:
http://www.meassociation.org.uk/201...eedom-of-information-request-24-october-2016/

But the main part of our meeting today was with the new chief medical officer at Capita - the organisation that carries out medical assessments for the DWP

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…..

So there really is a long way to go with changing minds at the top of the UK medical establishment

I'd say that the NICE correspondence indicated that we need to do more to move the discussion away from the debate over whether or not ME/CFS should be classified as a neurological condition, and onto the serious problems that have been identified with the work of those promoting CBT/GET as effective treatments of ME/CFS. I didn't see evidence of NICE rejecting patient concerns about those problems - instead they seemed oblivious to the details of them.

I'd assume that any doctor willing to work as Capita's CMO would be an ethically dodgy human being, but I think that the symptoms of ME/CFS are medically unexplained. There are lot of problems with the way the benefit agencies treat ME/CFS patients, but I don't know if pushing them on the point of how the condition is classified is the strongest point to push them on. The WHO classification does bring with it some important legal implications, but as the foundation of an argument, it's not our strongest point imo.

None of us should be under any illusion about how difficult the politics of debunking the PACE-style approach to ME/CFS in the UK are, and Charles has been at the coal face of this for a long time, but I think that making dramatic progress here is now looking more achievable than ever before.

 

[Aurator]

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 might like to see it, but not if the person in charge travels the world saying they have discovered the biological basis of a psychological disorder.

 

[Molly98]

[/QUOTE] So there really is a long way to go with changing minds at the top of the UK medical establishment

And sadly there aren't many docs like myself who are actually willing to sit down at meetings with organisations like NICE, NHS England, DWP, MRC, CMRC to argue the case that this is a serious and disabling neuroimmune disease

What would really help me (and the ME patient community) is to have MORE docs who were willing to get involved 'at the coalface' with the people who really have power in the UK medical establishment - rather than being told to resign/leave the Board of the CMRC (where I/we would not be replaced)

Would it really help if the MECFS charities all said they weren't going to join working groups set up by these bodies to deal with ME/CFS issues (another e.g. - the fluctuating conditions group at the DWP)

This approach of opting out of joining groups where there are people you disagree with is not the answer and I am not going to be resigning from the CMRC.......[/QUOTE]

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.

We have some great research going on by some great scientist and doctors and although they do a great job of presenting their research to those with an interest in ME, their time energy and commitments is to their research and rightly so. We need experienced doctors whose job it is to advocate on behalf of the ME community and medical science. One thing that strikes me is that many scientists are like artists, they may be brilliant at their work and incredibly deep thinking and intelligent people, but not so good or comfortable at the art of selling their work and ideas and promoting themselves or their work especially outside of their area of expertise, in fact many artists I know detest having to do the selling themselves and their work and would just rather get on with their art, I suspect it is similar with many scientists and researcher. I think that this is where the biopsychosocial lot have a huge advantage. Its seems to me that they actively love to sell themselves, their ideas, love an audience and are gifted in the art of persuation and marketing, they may be charming and convincing and good at networking.

We seem to be making big in road in scientific research lately but lets face it there has been masses of biological research over the years which show the biological differences in ME patients. I mean the IOM came to that conclusion. But its ignored as the BPS advocates go about their networking and charm offensive with the people who matter.

I think we need to be funding more doctors like Charles to take on the role of full-time advocate, diplomat even.for ME as a biological disease. We have some good people advocating for us such as Charles but its not enough we need more. The psychobabble may be winning the war on ME precisely because they are more savvy and skilled on a psychosocial level and know what works when it comes to selling ideas.

Lets face it even in war the politicians and forces chiefs know the importance of winning hearts and minds and the importance of diplomacy and alliance building. Strikes me that maybe we need to get a bit cleverer at playing the BPS lot at their own game and employ people with the energy, skills and knowledge base and professional qualifications to do so.

I for one would happily contribute financially what I could to help get medical advocates employed to help turn the tables.

 

[Cinders66]

I didn't notice the UK Millions Missing being less feisty than US ones. Did you?

Yes IMO. I didn't see clear demands in uk as USA had, there were fewer striking slogans and Bill boards, we didn't attract any eminent speakers to become more than a patient protest. In the run up it turned more into an awareness raising event which is how some of the media covered than a protest targeting specific bodies over specific things. There was just a general we need more funding theme but no figures or from who or how which then had AFME at the Bristol event , saying to the press we couldn't have more funding until society recognised and understood ME more which is pilf AFAIC - RFAs should have have being called for in my view . It was better than round 1 but I don't think it's moved things on in anyway as the states ones are I think.