Petition: Opposing MEGA

[lilpink]

For me therefore, a key issue is that all members are given a truly objective understanding of MEGA; not just its billboard headlines, but the underlying fundamentals as well. I do hope this will be the case.

And equal coverage of OMEGA on the MEA website and MEA FB page.

 

[Jan]

More news from outside the tent today - Invest in ME Research have arranged for Dr Øystein Fluge from Haukeland University Hospital in Bergen, Norway, to give a public lecture in #Norwich in January 2017. "We hope to see many at this event in Norwich. Welcome". Full announcement here - http://www.investinme.org/ce-news-1611-04.shtml

I started a thread after the update from IiMER yesterday - http://forums.phoenixrising.me/index.php?threads/uk-rituximab-research-update.47932/

Has the press been invited, maybe the BBC could attend to make amends for Fitnet bias?

 

[Jo Best]

Has the press been invited, maybe the BBC could attend to make amends for Fitnet bias?

Hi Jan, yes I gather they are hoping to arrange another BBC interview. Prof. Simon Carding, Leader of the Gut Health and Food Safety Research Programme, Institute of Food Research and Norwich Medical School at the University of East Anglia was interviewed by BBC journalist Susie Fowler-Watt in May 2015 about the foundation study for the Invest in ME Research Centre of Excellence project, which was the first funding target of the Let's Do It for ME campaign.

Edited to add the page about the gut research on the LDIFME site - http://ldifme.org/foundation-research-project/

 

[Snowdrop]

I'd like to say first that I have family and friends who live in the UK. None of them currently have ME. But who knows what the future holds.

People with M.E have carried the burden imposed by BPS theories for decades.

Every day. So many people. Simon Wessely used a Hamlet analogy somewhere (regarding PACE). . . I'd say BPS is Macbeth. There's blood of lives lost on their hands.

It is time to open the box, remove the tent cover and clean up the mess left behind by three decades of medical bias. Pace is a dead cat. It's stinking up the place. Get rid.

And if they won't become transparent and uphold scientific principle I suggest there isn't enough there to save. Burn the tent down. Although wear a gas mask--I suspect there's a lot of shit in that tent.

But really the BPSers as I've said are protected so burning the tent is really a euphemism for making them irrelevant by working very hard to move excellent research forward in other countries choosing carefully where we know there will be no taint of psychological bullshit.

 

[Barry53]

We regularly hear the BPS school opine that 'our' threatening and abusive behaviour turns off scientists from coming to ME research

If they are dyed in the wool BPS researchers - that is fine by me.

 

[Jo Best]

Mentioning the Let's Do It for ME campaign has reminded me, picking up on what @Graham was saying about MRC funding and the EDM calling for biomedical research, which prompted the announcement of £1.5m (later increased to £1.6m) ringfenced ostensibly to investigate causes of ME/CFS, that's another fine example of positive patient/parent power and productive use of the ME global internet village.

The Early Day Motion was tabled by Ian Swales in support of his constituents Jan Laverick (severe ME since teens) and her mother Margaret Laverick. EDMs rarely attract much interest from MPs but online social networking enabled word to spread and people wrote to their MPs asking them to sign the EDM, and then followed up if, at first, the MP declined. This resulted in over 100 signatures earning Ian Swales a short parliamentary debate and the news was covered in regional TV in one of the most sensible and sensitive pieces on ME I've seen.

Here it is on youtube -

(Jan's little dog Thomas passed away a few weeks ago by the way and she is still severely ill so she didn't get the chance to walk with him again).

Here's the parliamentary debate February 2011 - http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm

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/

 

[Barry53]

@charles shepherd, I reiterate that I appreciate all your efforts on our behalf. However, as someone who has had ME for 27 years, been a sporadic member of the MEA, am currently a member, and have dipped in and out of the MEA website over the years and recently started joining in on the MEA facebook page, I had no idea of the controversy about PACE, indeed I tried to follow the guidance of the NICE guidelines to gradually increase my activity to my lasting detriment. If the MEGA petition had been posted a year earlier, I would probably have signed it.

You say: 'What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support'. Of course that is true. That was true for me until a year ago, though I would add I also wanted to know about and understand the latest research developments.

It was only after the appalling newspaper headlines (ME patients get better with exercise and therapy) last October (2015) that I started digging deeper. I came by chance across Malcolm Hooper's Magical Medicine on the Invest in ME website and spent last December reading it, shocked to the core that what I had read in 2011 (PACE) and thought was merely rather poor quality research had a much more sinister story behind it. I also read Dr Melvin Ramsay's book and many research papers. As a result I pieced together my own version of the story of ME research and treatment over the last 30 years in the UK and wrote my own blog piece about it which I shared with family and friends.

I only came across Phoenix Rising a few months ago, again by chance when someone mentioned it on a facebook group. I joined 3 months ago. As a result I have felt much more supported, been alerted to and read good and bad research papers and gradually formed an opinion about MEGA which I have been prepared to change in the light of unfolding information. I have not come across dogmatic or closed minds in these discussions, though there has been much forthright and strong opinion expressed.

Why am I rambling on about myself, you may well ask. Because, I think the wider ME community deserves a chance to see both sides of the MEGA story, including the shenanigans of the BPS crowd. I'm sorry my papers are a bit of a mess and I'm not sure whether I've received the November ME Essentials yet. I hope the article about MEGA gives the full picture including all the reasons for the very real disquiet felt about the fact that it is to be overseen (as far as we can work out) by a doctor (Crawley) who has a track record of using inappropriate definitions and treatments of CFS/ME and doesn't seem to understand good science.

To be fair to MEA members, a consultation asking for views is only acceptable if all sides of the story are told. Perhaps Jonathan Edwards could be asked to write a piece spelling out his concerns.

I would go further and say the MEA should not be afraid to advertise Phoenix Rising to members and encourage those who are interested to join so more can educate themselves and interact widely with the world wide ME community. I wish I had found it sooner.

So yes, a year ago I probably would have signed MEGA out of ignorance. A month or so ago I signed OMEGA and the more I learn the more sure I am. Holgate's support of FITNET and the harassment of Keith Geraghty are the final straws. Will MEA members be told about these?

Edit - I see you say you are going to ask members their opinion of MEGA to inform MEA action when the protocol is produced. But how can MEA members form an opinion without that protocol? Surely this is the same mistake whoever put up the MEGA petition made - asking for support of something that is yet to be defined.

I do not normally quote a whole long post, but could not see anything I could get away with omitting here. It all chimes perfectly for me, having myself also only recently just discovered what has been going on, and become involved, since last August - even though my wife has had ME for a long time now. Canvassing opinions from the innocently uninformed would be very biased indeed.

 

[ianorourko]

There is an element of people on ME/CFS internet discussion forums preaching to the converted, especially when it comes to a topic like this where some people have very strong and fixed viewpoints

For example, almost all of the traffic on PR is against the MEGA study and the CMRC

But to what extent this reflects wider public opinion is uncertain

At the MEA we receive a huge amount of feedback from both members and non members on the phone, by email to ME Connect, on social media etc

But the number of calls and emails that we have had over the past few weeks regarding MEGA has been very small indeed

What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support

I have written a feature on MEGA for the November issue of our magazine and asked our members to let us know what they think about MEGA - which will obviously help to influence our decision when it comes to deciding whether we are happy to support the protocol that will be used in the research grant application bid for funding

Because at the moment we just don't know what the majority of people feel about MEGA…….

Wow, what you're proposing there is pretty obviously flawed. Of course wider public opinion ( ignorance ), in knowing little about ME politics and taking MEGA on face value ( especially since MEA so enthusiastically promotes/supports it ) would shift towards a pro MEGA tone.

Of course people's initial concerns are "practical management, getting a diagnosis, DWP benefit disputes, lack of social support". No duh. These individual things are a monumental mountain to climb with this illness and people can't be blamed for not having the energy or brain power to investigate the political issues properly. The MEA are the ones who are supposed to be looking out for the patients interests and instead you tell them "MEGA is grand" and then ask them "is MEGA grand? It's biomedical research, remember!" Just like people are normally so busy with life they just hope the government will do what's right for them, ME patients obviously believe their charities have their best interests at heart. Unfortunately, everybody is wrong. People in power serve their ego and enjoy it.

A lot of members of the MEA still think that PACE was grand and that CBT and GET makes some with ME/CFS better because the doctor at their fatigue clinic told them it would, and a guy with fatigue they heard about was cured by doing the Lightning Process. This ignorance isn't their fault, but you should really not be toying with their uninformed views as a way to boost your own viewpoints.

I respect you, Charles, and everything you have done and continue to do; but lately I notice some very Wessely characteristics to most of your responses ( and the proposed MEGA feedback craic above ). You could always smell the smugness and ego in Wesselys words. Everything he said was always so full of holes, but he just knew that he had the power and could say/do what he wanted. You could tell he really enjoyed playing the game. Don't play the game, Charles.

History is being written, and at the moment, you're on the wrong side of it. I really doubt that you being at the back of the MEGA room does anything at all. Much better if you came out and used your position to tear it down and rebuild something reasonable.

 

[lilpink]

History is being written, and at the moment, you're on the wrong side of it. I really doubt that you being at the back of the MEGA room does anything at all. Much better if you came out and used your position to tear it down and rebuild something reasonable.

Yes and double yes.

 

[Jan]

I've been saying for a while that I'm upset with the MEA for helping new patients locate their nearest fatigue clinic, BUT giving them no warning regarding the treatments they offer! The MEA does not support the CBT GET approach, but you need to look at their website to find that info out. Time and time again new patients are sent off to the clinics like lambs to slaughter. I'm pretty angry about it, the answer is always 'the MEA does not support get cbt, it's on our website', if you don't then why the hell don't you inform new patients before you send them off to clinics? Then you also get lots of patients saying I've tried get cbt and it's made me worse. What a ludicrous situation!

 

[charles shepherd]

So MEA members aren't interested in politics, research, funding etc? They really should be. I fully appreciate the newly ill are probably just hoping pacing and support will help them regain health and not really interested in much else but there's a vast 3 decade accumulated community beyond the newly ill

I think MEA members who aren't following other forums etc are likely to be very led by what the MEA prints in its magazine, and given that I'm sure the magazine for example has praised highly the CMRC conferences over the years, and has probably already celebrated MEGA (it was actually announced at the 2015 CMRC conference) and Holgate for creating it etc then unless they too have been dismayed by the FITNET media and are aware of Esther & Simon & SMC behind that, they probably will be thinking woohoo ME is to get millions spent on serious science, I support that unconditionally.

Anyway I look forward to reading the minutes of the CMRC meeting. I can't I'm afraid buy into the notion that MRC are really "into" funding ME research when they refuse RFAs (and we NEED them) haven't funded our bio bank (patients have), a post mortem facility or anything much since 2012 - and I think I read MRC aren't going to be approached to fund MEGA either. It was sad at the CMRC conference that at the debate on why researchers won't touch CFS/ME none of the key points were raised and therefore nothing much will change.

So where did I say that MEA members are not interested in politics, research, research funding?

What I did say is that I am dealing with far more queries about all the usual basic problems - benefit refusal, employment, NHS services, social care, all aspects of management, hopeless doctors etc etc - that affect people with ME/CFS rather than concerns or objections relating to the MEGA study

Although the MEA is basically a support and information medical charity, we are also a research funding charity through the MEA Ramsay Research Fund (where donations are ring fenced for research - there are no salaries to pay)

Our members are very supportive of the research we both fund and are actively involved with - in particular the ME Biobank and the various mitochondrial dysfunction studies we are funding

And since launcing the MEA Xmas appeal to set up the first UK metabolomics research study at the University of Oxford, that will aim to enlarge on the information from the Robert Naviaux study, our members have donated almost £9,000 in just over a week. Surely that demonstrates a real desire to also be involved in research funding?

MEA metabolomic study - Karl Morten et al:
http://www.meassociation.org.uk/how-you-can-help/make-me-better/

Robert Naviaux et al study
study:http://www.pnas.org/content/113/37/E5472.full

MEA Ramsay Research Fund:
http://www.meassociation.org.uk/research2015/

ME Biobank:
http://cureme.lshtm.ac.uk

CS

 

[Jo Best]

I've been saying for a while that I'm upset with the MEA for helping new patients locate their nearest fatigue clinic, BUT giving them no warning regarding the treatments they offer! The MEA does not support the CBT GET approach, but you need to look at their website to find that info out. Time and time again new patients are sent off to the clinics like lambs to slaughter. I'm pretty angry about it, the answer is always 'the MEA does not support get cbt, it's on our website', if you don't then why the hell don't you inform new patients before you send them off to clinics? Then you also get lots of patients saying I've tried get cbt and it's made me worse. What a ludicrous situation!

A patient kept raising that with MEA (that their list of clinics should come with a warning) but she was blocked from their page.

 

[charles shepherd]

I've been saying for a while that I'm upset with the MEA for helping new patients locate their nearest fatigue clinic, BUT giving them no warning regarding the treatments they offer! The MEA does not support the CBT GET approach, but you need to look at their website to find that info out. Time and time again new patients are sent off to the clinics like lambs to slaughter. I'm pretty angry about it, the answer is always 'the MEA does not support get cbt, it's on our website', if you don't then why the hell don't you inform new patients before you send them off to clinics? Then you also get lots of patients saying I've tried get cbt and it's made me worse. What a ludicrous situation!

Jan

The MEA position on CBT, GET and Pacing is stated in the MEA report summary on the Home Page of the MEA website:

Cognitive Behavioural Therapy (CBT)

We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.

CBT courses based on the model that abnormal beliefs and behaviours are responsible for maintaining the illness, have no role to play in the management of ME/CFS and increase the risk of symptoms becoming worse. The belief of some CBT practitioners that ME/CFS is a psychological illness was the main factor which led to less symptoms improving, less courses being appropriate to needs, more symptoms becoming worse and more courses being seen as inappropriate.

Our results indicate that graded exercise therapy should form no part of any activity management advice employed in the delivery of CBT, as this also led to a negative impact on outcomes.

There is a clear need for better training among practitioners. The data indicates that lack of knowledge and experience had a direct effect on outcomes and remained a key factor, even where courses were held in specialist clinics or elsewhere given by therapists with an ME/CFS specialism.

However, our results did indicate that, when used appropriately, the practical coping component of CBT can have a positive effect in helping some patients come to terms with their diagnosis and adapt their lives to best accommodate it.

CBT was also seen to have a positive effect in helping some patients deal with comorbid issues – anxiety, depression, stress – which may occur at any time for someone with a long-term disabling illness.

An appropriate model of CBT – one that helps patients learn practical coping skills and/or manage co-morbid issues such as those listed above – could be employed, where appropriate, for ME/CFS as it is for other chronic physical illnesses such as multiple sclerosis, Parkinson’s disease, cancer, heart disease, and arthritis and we recommend all patients should have access to such courses as well as access to follow-up courses and/or consultations as and when required.

Graded Exercise Therapy (GET)

We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.

A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms becoming worse or much worse and leading to relapse. And it is worth noting that despite current NICE recommendations, a significant number of severe to very severe patients were recommended GET by practitioners and/or had taken part in GET courses.

The other major factor contributing to worsening symptoms was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’.

We recognise that it is impossible for all treatments for a disease to be free from side-effects, but if GET was a licensed medication, we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.

As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and not possible at present.

Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.

However, we conclude that GET cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.

GET should therefore be withdrawn by NICE and from NHS specialist services as a recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.

Pacing

Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.

For some, improvement may be a slow process so, whilst they may be somewhat better by the end of a course, the improvement is not enough to take them into a better category of severity for some time, perhaps not until they have self-managed their illness for a few years.

The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status. Learning coping strategies can help make courses more appropriate to needs even if they do not lead to immediate or even longer term improvement in symptoms. Importantly, it can prevent symptoms from becoming worse.

Pacing can be just as applicable to someone who is severely affected, as to someone who is mildly or moderately affected, although additional measures need to be taken to ensure that a person who is severely affected has equal access to services.

As with CBT, there must be better training for practitioners who are to deliver such management courses. Proposed increases in activity, both mental and physical, must be gradual, flexible and individually tailored to a patient’s ability and circumstance and not progressively increased regardless of how the patient is responding and therapists must be taught to recognise that.

All patients should have access to suitable courses, follow-up courses and/or consultations as and when required.

 

[charles shepherd]

A patient kept raising that with MEA (that their list of clinics should come with a warning) but she was blocked from their page.

Jo - This person was NOT blocked from MEA Facebook because she kept complaining about the fact that the MEA website has a directory of all the NHS referral services in the UK

There were other reasons relating to our Facebook code of conduct - just like PR we do (verr occasionally) have to remove someone from posting on our social media

People are free to complain about the MEA NHS services directory and I regularly respond when this issue is raised

The MEA believes that people have a right to know about ALL the NHS ME/CFS referral services in the UK

And the pros and cons of individual ME/CFS clinics are regularly discussed our Facebook page

 

[charles shepherd]

The MEA website NHS Services Directory is, in fact, one of the most viewed sections on the MEA website

The NHS does not keep a list of NHS services that they can refer people to - so they also refer people and doctors to the MEA list

MEA services directory:

http://www.meassociation.org.uk/spe...uk-this-page-last-updated-on-27-october-2016/

 

[Hutan]

However, we conclude that GET cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.

It's great that the MEA says this about GET. But your response didn't answer @Jan. Why is the MEA effectively advertising (and therefore endorsing) NHS clinics that are prescribing GET for people with ME on its web page?

For example:

South Yorkshire and North Derbyshire
Michael Carlisle Centre, Lyndhurst Road, Sheffield S11 9BJ
...treatments offered provide a range of specialist, evidence-based, therapeutic interventions to individuals with a diagnosis of ME/CFS. The interventions provided are dependent on the severity of symptoms experienced by, and the preferred choice of, the individual. All treatments within the CFS/ME Service are based on graded activity management strategies within a cognitive behavioural framework, including practical and psychological interventions to facilitate behavioural change to enable individuals to maximise their potential and make sustainable improvements.

This makes as much sense as a lung cancer charity saying that smoking is bad in one part of its website and then promoting cigarettes in another part.

The MEA website NHS Services Directory is, in fact, one of the most viewed sections on the MEA website

This is not a justification for providing the information without comment. It actually makes it all the more important for the MEA to be clearly advising patients about the safety of the treatments offered at these clinics.



.

 

[Barry53]

Does this not indicate why many members of the MEA remain unaware of the real situation.

 

[Jan]

It's great that the MEA says this about GET. But your response didn't answer @Jan. Why is the MEA effectively advertising (and therefore endorsing) NHS clinics that are prescribing GET for people with ME on its web page?

For example:



This makes as much sense as a lung cancer charity saying that smoking is bad in one part of its website and then promoting cigarettes in another part.


This is not a justification for providing the information without comment. It actually makes it all the more important for the MEA to be clearly advising patients about the safety of the treatments offered at these clinics.



.

@charles shepherd So if a patient asks for advice on clinics on your facebook page, they are then referred to the list, then go to clinic. Don't you see, they may never look at the the page on which you warn against the treatments! You need to put the warning on the page with the list of clinics, otherwise you are just endorsing the clinics and adding to the numbers of people harmed by these treatments.

 

[TiredSam]

I've noticed recently that scientists and charities who become involved in supporting or collaborating in any way with the BPS crowd quickly lose credibility and become tainted, Stephen Holgate being the most recent example whose reputation has plummeted within the community of ME sufferers.

It would be a real shame for this to happen to the MEA, but it seems to be the direction things are heading. The BPS-front charities seem to be jockeying for position, influence and power at the moment, as usual, and seeing other charities as competition to be undermined and defeated. Who would benefit if the MEA started losing credibility and support amongst sufferers just because of this one issue?

Apart from its stance on the MEGA trial I get the impression that most sufferers including PR members are delighted with the work of the MEA and @charles shepherd, I certainly am, I finally got round to listening to the two recent broadcasts from BBC Radio Scotland in my car yesterday and felt extremely fortunate to have such a spokesperson speaking up on our behalf.

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.

 

[Graham]

Could a FOI uncover how many research applications have been turned down? Does anyone have the energy to do this?

I have tried to find out. I did submit a formal complaint to the MRC in 2015. Their response was that all expert assessments were overseen by a board: that experts who participate in this process do so on the understanding that their identity will remain confidential, with anonymised comments only being made available to applicants.

Only some of their files are transferred for permanent preservation, and that includes around 5% of grant applications. All files are given an initial closure period of 30 years. When sensitive personal information is found to be contained on a file it may be closed until they are able to confirm that that person has died or would be 100 years old. You will perhaps remember that much of the ME stuff was shut away for 70 years, until Valerie Eliot-Smith managed to get several main chunks released. Most of the information about unsuccessful applications is destroyed.

I did find out that there were 84 submissions between 1996 and 2015: they commented that success rate in general is rarely more than 25%. So it would be reasonable to assume that around 20 would be successful, but the true rate is probably about half of that. If we exclude the 5 studies in 2012, after their arms were twisted by parliament, then the success rate, even of psychosocial research, is very, very poor.

Obviously I have copies of my submission, their reply and my response, but I have yet to decide what to do with them.