Petition: Opposing MEGA

[trishrhymes]

@Graham, I wonder whether you would be willing to start another thread in which you and others could share copies of correspondence to and from the BBC such as that you describe? if they are using the excuse that discussing ME is toxic based on SMC spin about threats it might be worth asking them for evidence. And there must be toxic subjects covered by BBC news every day. That is surely not a good reason for biased coverage.

 

[batteredoldbook]

But personal attacks can sink to pretty low levels elsewhere on the internet - which is partly why very few docs are willing to interact on social media

I think this statement lacks necessary balance.

 

[trishrhymes]

God, I'd kill to be 67. I've got another 40 years of this.

Not to be me you wouldn't.

Hi @worldbackwards , I clicked 'like' for these comments, but it doesn't feel right. My intention was to convey 'I hear you'. I do hope the next 40 years for you will include early successful treatment.... As I hope for all sufferers, especially the younger ones with so many years ahead and who have had so little chance to enjoy healthy life. Best wishes.

 

[batteredoldbook]

But personal attacks can sink to pretty low levels elsewhere on the internet - which is partly why very few docs are willing to interact on social media

I think this statement lacks necessary balance.

@charles shepherd,

If I understand you correctly; you suggest medicine is allowing the behaviour of a minority of M.E patients to affect the future direction of M.E research for all. Unfortunately, this has become a common refrain from British medicine and it is one that needs to be given a rest.

The ME community does indeed have a problem with abuse and I no longer try to represent M.E patients as a direct result of it. https://justpaste.it/x1yi I am saddened but unsurprised to hear that you experience the same.

However, on leaving M.E advocacy I blocked a handful of groups and a handful of advocates. I believe respect is the foundation of all progress and I am dismayed by both abuse and tolerance of abuse.

One of the groups I blocked was The Lancet. I should not need to remind you that I was unsuccessful when I tried to contact charities, CMRC and medicine to resolve this particular issue. You are also, I am certain, aware of the name-calling directed towards respected M.E advocates during the struggle to view the Pace Trial data.

Personal experiences aside, British medicine is exhibiting an unhealthy level of selectivity and bias. Prescribing sunshine and brisk walks (CBT/GET) to the seriously ill constitutes a sustained assault on the expression of symptoms and the expression of harm. This is ongoing and highly disrespectful behaviour from medicine and should, at the very least, be added to the scales when judging who is abusing whom.

@batteredoldbook

 

[trishrhymes]

No - I am not accusing anyone on PR of bad behaviour

But personal attacks can sink to pretty low levels elsewhere on the internet - which is partly why very few docs are willing to interact on social media

I don't want to introduce yet another discussion on this thread but it can be pretty unpleasant for those of us who do have to put up with this nonsense from a very tiny minority from time to time - on one occasion I had to involve the police because falsified documents had been involved and another person (I think) still has a restraining order imposed by the courts

In fact, I was in contact with someone tonight (not a psychiatrist) who just would not do social media for this very reason….

I sympathise with everyone who receives nasty or threatening stuff, but am not sure why you raise it here. Sadly it seems to be rife on social media with attacks on teachers, doctors, women, gays, disabled people, people with ME, etc

. I started to look at the comments put up by the public after a recent poor quality guardian article on FITNET, as I wanted to add a politely critical comment. I quickly stopped reading the (moderated) comments, as most of them were pretty vile about ME sufferers and I found it really upsetting. I was surprised that the Guardian moderator felt it was appropriate to let these comments through.

We cannot control the behaviour of others and are right to point it out and criticise it. That also includes the appalling behaviour of senior members of the CMRC towards Keith Geraghty. I assume you, as a decent person will, or already have, call them to account. If a full apology and acknowledgement of wrongdoing is not given to Keith, including withdrawal of the complaints made to his University with acknowledgement that they were wrong, I cannot see how the MEA can continue to be part of CMRC, which has been demonstrated by this instance to be, I venture to suggest, a corrupt organisation.

Sorry, none of this is a personal attack on you, @charles shepherd, nor is this comment directed solely at you. I am finding the whole politics of the CMRC, deeply troubling, and wonder whether I as a member of the MEA, I still want to be represented on it. Add to this the fact that Sonya Chowdury is listed as the representative of patient organisations on MEGA. She certainly doesn't represent me.

@charles shepherd , I am not asking you to waste your limited time replying directly to this rather rambling rant. It is enough that I have shared my thoughts and some people will read them.

I wish you all a happy, or if not that, at least a bearable day.

 

[batteredoldbook]

It's only pixels on a screen: they can be dumped and ignored.

@Graham,

Without delving too deeply into the nature of Platonic reality, if I am pixels on a screen, then who came and ate your cake?

I think there is a danger that if we gamify our interactions here, we trivialize their importance and we ignore the very real potential words have for causing harm. I've always tried to treat the people I've spoken to on here as valued human beings (as indeed do you).

When I was an advocate back in the day, I responded to thousands of emails and I remember receiving only about three nasty ones. ("Get off your fat ass!" etc). When I returned to advocacy in 2012 I received abuse within my first ten tweets. And so it has continued. And people tell me that Twitter is like a Routing Tootin' Wild West but no, the medium is not to blame. I've received abuse via Twitter, DM, PM, Facebook, telephone and IRL. I've received abuse from medicine, patients, and patient advocates. It's a real problem.

The reason I stood up to defend Jeannette this year was because I knew the M.E community would leave her to suffer. I knew this because I was left to suffer the year before. It really is grim you know. Let me assure you the M.E community and charities owe SW at least one iota of respect.

As you know I am within a hair's breadth of leaving M.E entirely and I am, frankly, gobsmacked to find that I am leaving in part due to patient behaviour. I would never have thought it. The life-consuming primary symptom of M.E is Post-Exertional Neuroimmune Exhaustion. When abuse, or more euphemistically, "social stigma" begins to rival the primary symptom of your disease it's time to at least consider moving on.

James/.
@batteredoldbook

 

[trishrhymes]

@Graham,

Without delving too deeply into the nature of Platonic reality, if I am pixels on a screen, then who came and ate your cake?

I think there is a danger that if we gamify our interactions here, we trivialize their importance and we ignore the very real potential words have for causing harm. I've always tried to treat the people I've spoken to on here as valued human beings (as indeed do you).

...

As you know I am within a hair's breadth of leaving M.E entirely and I am, frankly, gobsmacked to find that I am leaving in part due to patient behaviour. I would never have thought it. The life-consuming primary symptom of M.E is Post-Exertional Neuroimmune Exhaustion. When abuse, or more euphemistically, "social stigma" begins to rival the primary symptom of your disease it's time to at least consider moving on.

James/.
@batteredoldbook

As a relative newcomer to the murky world of ME politics, I have no idea what you are referring to here, but I'm sorry to hear you have suffered abuse. I'm not asking you to go back over it, just wanted to express support.

 

[TiredSam]

Not to be me you wouldn't.

OK fellas I got one ... which would you rather be, 67 or @worldbackwards?

 

[Daisymay]

We cannot control the behaviour of others and are right to point it out and criticise it. That also includes the appalling behaviour of senior members of the CMRC towards Keith Geraghty. I assume you, as a decent person will, or already have, call them to account. If a full apology and acknowledgement of wrongdoing is not given to Keith, including withdrawal of the complaints made to his University with acknowledgement that they were wrong, I cannot see how the MEA can continue to be part of CMRC, which has been demonstrated by this instance to be , I venture to suggest, a corrupt organisation.

Yes, very well said. MEA and others in the CMRC should very definitely be bringing this to the attention of all the members of the collaborative and action should be taken.

Charles, can you please tell me what steps MEA have taken?

I hope MEA have taken action? Failure to do so would be tantamount to condoning this behaviour, the abuse, for that's what it is, and I'm sure MEA wouldn't want to do that?

I look forward to hearing and reading in the CMRC minutes what action the CMRC has taken.

 

[worldbackwards]

OK fellas I got one ... which would you rather be, 67 or @worldbackwards?

87.

 

[user9876]

. I started to look at the comments put up by the public after a recent poor quality guardian article on FITNET, as I wanted to add a politely critical comment. I quickly stopped reading the (moderated) comments, as most of them were pretty vile about ME sufferers and I found it really upsetting. I was surprised that the Guardian moderator felt it was appropriate to let these comments through.

My experience of the Guardian comments section is that they remove a lot of negative comments about PACE but leave comments dismissing and insulting ME patients.

 

[batteredoldbook]

The MEGA Budget.

M.E patients want research and research funding in the hope that they will receive better treatment. Patients imagine that, say, a biomarker will bring with it validation, fair treatment and respect. I think they have this exactly the wrong way around. I think pwme will not get the research they need until they demand the respect they so rightly deserve. I think there is a very real risk that the pursuit of research funding may become a ring through patients' noses: one by which they can be indefinitely led.

It's amazing what you can do when you accept your limitations and budget your energy accordingly. Through necessity mild and moderately affected pwme become exceptionally good at managing their limited power. It is now time to put this ability to the test.

The proposition before us is "MEGA": a study perhaps costing £10M and lasting 10yrs. On the face of it, it appears to be what pwme have cried out for: Biomedical research, but there are problems at the outset. Researchers appear to be resisting discussion of previous research. There's already talk of broad criteria and subjective assessments and at least one researcher involved thinks the methodology of Pace is sound. Oh dear, will we never learn? The best we can say is that the benefit to pwme from MEGA ranges from potentially very very good, to potentially very very bad.

So what's the alternative? What else could the CMRC offer? Well, the removal of PACE and the NICE treatment guidelines that it supports would, at a stroke: validate M.E patients; give patients protection from Medically Induced Over-Exertion and clear the entire field ready for new research to flourish. "Wow. Yeah. Gotta get me some of that! How much?" Well, the work required to refute Pace has already been freely given by a team of dedicated and generous patients and patient advocates. So its removal would cost us nothing.

So, my energy budgeting friends, why are we being asked by medicine and charities to spend £10M on a potential benefit when we could gain certain benefit at a cost of £0M?

I suggest British medicine is in a hole over M.E and may be attempting to dig deeper. Would that it could listen to those of us who wish it no harm and have offered to help. But, in M.E-land Pace is a chest-freezer dumped in the middle of our allotment: we can work around it forever, or we can remove it as a team.
All together now: LIFT!

@batteredoldbook

 

[user9876]

I think that it would be best if anyone getting unpleasant e-mails were to make them public rather than just provide reports of them. We've seen from Crawley and co how different people can have quite different views about what sort of correspondence could be considered nasty or threatening.

As researchers were saying in response to the recent accusation of 'methodological terrorism', a failure to name names and provide specific examples can lead to entire groups of people being wrongly stigmatised, while failing to reveal any genuine wrong-doing that may be taking place. If a minority are acting badly, then it would be good to call out these specific individuals in the hope of trying to change their behaviour. Just vague references to nasty e-mails leave us unable to do anything to change things.

I think one of the issues in the UK is behind the scenes lobbying from academics such as Wessely and Holgate to try to get their own way. I get the impression that when someone who people may listen to steps over a line in criticizing PACE they get lobbied by Wessely. Such emails should be in the public domain. Especially as Wessely and Holgate are paid for by the state.

As far as I can tell a lot of what people constitute as abuse and harassment is people questioning their judgement. But this should be part of the scientific process. We should remember that when the CMRC discussed harassment they said the worst was FoI requests (such as getting PACE data) and also parliamentary questions. So as a result academics and someone in the MRC signed up to reporting the means that governments have said are important for public accountability as harassment. I think that is shocking. We pay their wages we have rights to know how they are spending public money.

 

[lilpink]

I think that it would be best if anyone getting unpleasant e-mails were to make them public rather than just provide reports of them. We've seen from Crawley and co how different people can have quite different views about what sort of correspondence could be considered nasty or threatening.

I find it odd that these claims are continually made and always without evidence. It seems the ICO felt they were unsubstantiated too. Anyone can make false claims of harassment. Redacted evidence should be made public... one person's irony is another person's death threat. There seem to be some very sensitive flowers in ME advocacy and ME politics... perhaps they're in the wrong game? There is also the observation re 'those in glass houses...'

 

[trishrhymes]

@batteredoldbook I heartily agree that the biggest step forward would be to retract PACE and change the NICE guidelines. This could at a stroke abolish all the GET based treatment clinics and trials that are doing so much damage.

I had a go at influencing things by writing to my MP and got a coldly dismissive answer.

Do you have any suggestions of a way forward, other than the efforts of @charles shepherd and probably others I don't know about? Is there anything more we can do as individuals? I'd like to be able to do more on this.

 

[Barry53]

So its removal would cost us nothing.

Unfortunately the consequential cost would be huge, which I am sure is why the UK government must be pulling strings to retain the status quo. ME patients suddenly entitled to social benefits they have been wrongfully denied for so many years; claims for lost benefits; damages; and so forth.

At the very least I suspect they are looking for breathing space, so that once the truth really does come out (despite what it might wish for, the UK government cannot influence the whole world), they will have found a way to absolve themselves of historical liabilities.

Just my jaded opinion.

 

[trishrhymes]

I find it odd that these claims are continually made and always without evidence. It seems the ICO felt they were unsubstantiated too. Anyone can make false claims of harassment. Redacted evidence should be made public... one person's irony is another person's death threat. There seem to be some very sensitive flowers in ME advocacy and ME politics... perhaps they're in the wrong game? There is also the observation re 'those in glass houses...'

Hi @lilpink, I'm not sure I understand what you are saying here.

I agree that the tribunal found the PACE researchers' claims of harassment unfounded, that in fact they were talking about justified criticism of their work, requests for data and a single instance of heckling.

I am having difficulty making the connection between this and calling ME advocates 'sensitive flowers', and calling advocacy a 'game'. Are you saying if advocates suffer abuse they should accept this as normal and leave if they don't like it?

 

[eafw]

I think one of the issues in the UK is behind the scenes lobbying from academics such as Wessely and Holgate to try to get their own way.

The biggest issue we face is the lobbying from the pro-PACE/GET/CBT/NICE brigade, and it's not just a couple of people there's a whole very well-resourced network shilling for them - and they have been for years.

Crawley and Holgate, even Wessely on their own would be nothing, it's the SMC and the rest that have been running this anti-patient, trying to disappear ME campaign, and doing a great deal of damage as a result.

It's why we really need the good charities and any other decent people to speak more clearly about the rot in the system and stop giving credibilty to set-ups like the CMRC.

 

[A.B.]

Let me assure you the M.E community and charities owe SW at least one iota of respect.

By SW I assume you mean Simon Wessely? We owe him no respect whatsoever. That the victims of his scheming cry out and call him names does not make Wessely a better person or deserving of respect. You seem to be influenced by the victim blaming propaganda of the Wessely school. I find it difficult to believe that they are acting in good faith.

The post hoc changes to the PACE protocol, with the subsequent cover up of the poor results, and the media campaign against critics of PACE, the silly excuses for not sharing data, and their defeat in a tribuanl should make it very clear what kind of people we are dealing with. Their goal is not truth, it is to promote the idea that CBT/GEt work and that CFS is a mental disorder, and they don't care if lives are ruined and real treatments delayed.

 

[charles shepherd]

Following on from the sub-discussion about our NHS services Directory:

MEA Directory of NHS Services for people with ME/CFS in the UK
November 20th 2016 update:

http://www.meassociation.org.uk/spe...k-this-page-last-updated-on-20-november-2016/
including a new introduction:

Specialist services round the UK – this page last updated on 20 November 2016
Home > Specialist services round the UK – this page last updated on 20 November 2016
PLEASE READ THIS STATEMENT BEFORE SEARCHING THE LIST

Most of the NHS clinics for people with ME/CFS in this MEA directory base their management programme on the possible use of cognitive behaviour therapy (CBT) and/or two differing approaches to activity/energy management known as graded exercise therapy (GET) and Pacing.

We suggest that you download and read the summary of the recommendations from the MEA ‘patient evidence’ report on CBT, GET and Pacing before deciding which of these approaches to management you think would be acceptable and may be helpful in your situation.

You could also take a copy of the summary of the MEA Report to the clinic if you have any questions or concerns about the sort of management programme that is being offered or recommended – if it involves CBT or some form of activity management.

In line with what is known as informed consent, people should not be coerced or persuaded into taking part in any form of management (drug or non-drug) where they have concerns over acceptability, effectiveness or safety – all of which should be discussed between doctor and patient before a decision on management is made.

Dr Charles Shepherd
Hon Medical Adviser, ME Association



Contact details for the services appear below. Please remember that, while patients can contact any of the services for information, referrals for assessment, diagnosis and treatment must be made by your GP or the professional responsible for your health care.

The details given below could change at any time, and the management regimes vary from place to place. The ME Association tries to keep the contact information up-to-date but we cannot be held responsible for the consequences of any inadvertent errors or delays in updating this information.

If you spot any mistakes or wish to notify us of any omissions, please email us

The ME Association is collecting feedback on these services and we welcome comments from people who have been referred for either diagnosis or management. In the meantime, if you require further information on what sort of approach is being taken at a specific clinic you could approach the service direct or contact a local ME group.