Petition: Opposing MEGA

[user9876]

By SW I assume you mean Simon Wessely? We owe him no respect whatsoever.

Given the lack of respect he has for patients and the way he has treated people with ME I also think we owe him no respect whatsoever. He has been involved in a campaign that stigmatizes patients in order to support his pet theories.

Also I have read some of his papers and I wasn't impressed so he gets no respect from me for his work.

 

[user9876]

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.

I think it is very easy to think of a co-ordinated campaign from government to save money. But I see it in terms of academics pushing there pet theories and using the way the medical establishment works to do that. It may help them get influence as they claim they save government and insurance companies money. In reality they are costing the government millions by pushing inappropriate treatments that make people less well and blocking research into things that might help. They may well end up costing insurance companies large amounts because they have been encouraging them to inappropriately price their products by downplaying costs and risks associated with ME. Talking with people in LLoyds (nothing around heath) a few years ago the big issue was around getting actuarial figures wrong and having a greater risk on the books than they thing - which is what happened with Asbestos.

 

[Keela Too]

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.
....... snip.....

Excellent - the page is now much more useful like this. Thank you.


Edit. Seems the graph is no longer there. I have often used that graph - it would be useful to leave it displayed on the page I think.

 

[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.

Thank you, you're lovely, that's so cool of you to say. Welcome to M.E politics. Always know where your towel is. http://hitchhikers.wikia.com/wiki/Towel

 

[TiredSam]

By SW I assume you mean Simon Wessely? We owe him no respect whatsoever.

There are different attitudes to respect. Some think it has to be earned. Others think if you don't treat others with respect, then you forfeit the right to any respect from them.

In Germany respect is considered an inalienable human right no matter who you are and what the circumstances, and enshrined in the constitution (I believe there are historical reasons for this). I like living in a country with that attitude, where people mostly remember to treat each other with respect even when they disagree.

Philosophical debates aside, I do think we owe SW the basic amount of respect due to any fellow creature. So on that happy day when he's locked up for crimes against humanity, I think he should still get three meals a day, be allowed to attend to his personal hygiene, and have the occasional visitor as long as he behaves himself and they can find anyone who still wants to have anything to do with him.

I think if we treat him any worse than that, we just diminish ourselves.

 

[lilpink]

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?

I was saying that anyone, be that the BPS school or others, who continually claim they have been harassed or abused should refrain from making these statements without either providing the evidence or making a proper complaint to the police. Otherwise it's simply mudslinging, creating a narrative that might be false. We of course see it promulgated mainly by the BPS school but some advocates seem to like to repeat these slurs without providing any evidence they exist. Of course it's wrong to harass and abuse but it's also wrong to make slurs against a patient population which may be entirely innocent of any wrong doing. It's particularly insidious of 'advocates' to make comments about harassment without providing good evidence as they do, in effect, reinforce this notion that the BPS school continues to repeat at every opportunity. It feels more adversarial than it does the act of an advocate fully onside. In terms of skewed notions of harassment such as conflating FOIA requests etc with abuse then if these poor little flowers find that too bruising they should just shut up and get out.

 

[batteredoldbook]

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.

Agree, even on back of envelope, financial considerations huge. I'd also say medical treatment for M.E fits very neatly into a wider social context of contraction and dismantling of public institutions, services and jettisoning of responsibilities.

Barn's on fire.
Yup.

 

[batteredoldbook]

By SW I assume you mean Simon Wessely? We owe him no respect whatsoever. .

Sorry, don't mean to offend. Context here is that he was once kind to me when others were not. I am aware that this is kinda dwarfed by the scale of the problem in M.E but, still, it wasn't nothing, in my opinion.

 

[batteredoldbook]

@batteredoldbook
Do you have any suggestions of a way forward.

M.E is an engine. And the people you will meet are its parts.
Though we may rotate in different directions and push against one another:
each one of us here is vital to the whole.

M.E is an engine in the process of exploding.
Too many parts think that they alone are right.
They fly off away from each other each on their own personal trajectory.

But the engine won't work without all the pieces.
Every voice has a part to play.
Every part needs to choose to return to the origin.

Now. That's a long winded, and mightily pretentious way of saying:
"I am sad to block people. It ended my ability to solve this problem".

Do better than me.

@batteredoldbook

 

[charles shepherd]

Excellent - the page is now much more useful like this. Thank you.


Edit. Seems the graph is no longer there. I have often used that graph - it would be useful to leave it displayed on the page I think.

I added the graph but I think it might be useful to add it to the website bit as well

 

[charles shepherd]

I was saying that anyone, be that the BPS school or others, who continually claim they have been harassed or abused should refrain from making these statements without either providing the evidence or making a proper complaint to the police. Otherwise it's simply mudslinging, creating a narrative that might be false. We of course see it promulgated mainly by the BPS school but some advocates seem to like to repeat these slurs without providing any evidence they exist. Of course it's wrong to harass and abuse but it's also wrong to make slurs against a patient population which may be entirely innocent of any wrong doing. It's particularly insidious of 'advocates' to make comments about harassment without providing good evidence as they do, in effect, reinforce this notion that the BPS school continues to repeat at every opportunity. It feels more adversarial than it does the act of an advocate fully onside. In terms of skewed notions of harassment such as conflating FOIA requests etc with abuse then if these poor little flowers find that too bruising they should just shut up and get out.

Worth having a look at this (as it names names) if you have not already seen it:

http://www.meactionuk.org.uk/Openness_-_Part_2.htm

The final section deals with 'malicious harassment'

 

[Cinders66]

There are different attitudes to respect. Some think it has to be earned. Others think if you don't treat others with respect, then you forfeit the right to any respect from them.

In Germany respect is considered an inalienable human right no matter who you are and what the circumstances, and enshrined in the constitution (I believe there are historical reasons for this). I like living in a country with that attitude, where people mostly remember to treat each other with respect even when they disagree.

Philosophical debates aside, I do think we owe SW the basic amount of respect due to any fellow creature. So on that happy day when he's locked up for crimes against humanity, I think he should still get three meals a day, be allowed to attend to his personal hygiene, and have the occasional visitor as long as he behaves himself and they can find anyone who still wants to have anything to do with him.

I think if we treat him any worse than that, we just diminish ourselves.

If SW were locked up , no I wouldn't deprive him of basic human rights but that isn't because I respect him. I can be more decent to him than he has been when he has trashed the illness in the press or buried ME in his naf CFS which has resulted in some with severe ME going WITHOUT what we would consider Basic human rights of proper food, proper hygiene and human company. I'm afraid I've seen some of his twitter where he will quietly retweet a very controversial paper at the same time as pretending he's all for biological research, heard him on the radio where he lets it go unchallenged when journalists call this psychiatric, seen him quoting repeatedly that us silly patients (my words) want there to be a virus or something utterly simplistic, know that he's sat with the SMC orchestrating this whole poor victim scientist narrative whilst the victims of this CFS world waste away in bed, and I've NEVER seen or heard the compassion and kindness our community deserve in the media or in the numerous papers of his I've read, regardless of the therapist he plays in office or how charming he can be to individuals he wants onside.

 

[worldbackwards]

I like living in a country with that attitude, where people mostly remember to treat each other with respect even when they disagree.

No plans to move to the UK then.

 

[Jo Best]

2,800 signatures now. I think in three days time the Opposing MEGA counter-petition will have been up for the same number of days as the MEGA petition was (I think that closed on the evening of 2nd November) -
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

I was very concerned that a counter petition of this sort would be an own goal. However, reading this I cannot really fault it and am actually impressed by much of the wording and argument. The up front reference to researchers whose work has been shown to be substandard may seem inflammatory but we are past that now and I think being to the point is a strength. The point that MEGA is not the only game in town is well made. From my point of view I have yet to see any information that would convince me that any original thought has gone into the project. I am not a fan of Big Data. They jumped the gun and it is entirely legitimate to say so because it is an insult to the patients' intelligence.

So I think I would encourage all members to sign. If the petition is there and is making a fair point good numbers of signatures would have impact.

 

[TiredSam]

If SW were locked up , no I wouldn't deprive him of basic human rights but that isn't because I respect him.

I quite agree. The reason I wouldn't bribe the guards to lock him in the showers with Mr Big and turn a deaf ear to whatever screams transpired isn't out of any concern for his welfare, but because it may not reflect well upon us.

 

[Cinders66]

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.

For years we have been told we have to accept slow mo and compromise. Right back since the 90s it is what has happened with the name change etc, accepting weak criteria and umbrella terminology. I'm frustrated because in 2016, with a much more solid case against those for whom feeding tubes, catheters and morphine isn't enough evidence of being seriously physically ill, we are still on the slow mo compromise path. The USA have shown signs they've broken off it, admittedly with various things like IOM report, Ron Davis' situation, science and advocacy etc to help but I see no reason to accept what the CMRC did with the fitnet media blitz anymore. Ok they might think they are bestowing is with a single biomedical study, but what other applications are they going to get with their failed CFS brand and it's users still pushing the cbt model? We should have been having the VO2 exercise research replicated over here, the PET scan research - MRC are beavering away at that for schizophrenia - replicated, there should have been rituximab trials regardless if eventually a couple million bucks got wasted. I agree the CMRC is legitimising/continuing the status quo approach, I'm not content to look to 2022 to when the illness might be better defined, better named, STARTING TO BE better researched, not lumped under a fatigue umbrella etc.

 

[TiredSam]

No plans to move to the UK then.

Don't get me started, it'll derail the thread and get me into trouble for bad language ...

I'll be taking my German citizenship test in the next couple of months, wish me luck

 

[Snowdrop]

There are different attitudes to respect. Some think it has to be earned. Others think if you don't treat others with respect, then you forfeit the right to any respect from them.

In Germany respect is considered an inalienable human right no matter who you are and what the circumstances, and enshrined in the constitution (I believe there are historical reasons for this). I like living in a country with that attitude, where people mostly remember to treat each other with respect even when they disagree.

Philosophical debates aside, I do think we owe SW the basic amount of respect due to any fellow creature. So on that happy day when he's locked up for crimes against humanity, I think he should still get three meals a day, be allowed to attend to his personal hygiene, and have the occasional visitor as long as he behaves himself and they can find anyone who still wants to have anything to do with him.

I think if we treat him any worse than that, we just diminish ourselves.

I was considering making this point when reading above. The only other thing I would say is that to me respect isn't a monolith--and I think this has been touched on as the conversation moved along. There is the basic respect of human rights and this is more about the respecter than the respected and it is a blanket respect that includes everyone It's about who we are as people and I would say that the BPS group do not value HR much. But then there is beyond that an evaluation of individuals whom we either know or know of as public figures and it is important to be able to judge behaviour and assess do we respect this. I expect this is nothing new to anyone.

What I want to add though is about abuse. IMO patients ought to be cut some slack when applying balance to the he said/she said. That is, the BPS people who make accusations have much more power (particularly to spread widely their complaint to the public and more respect from the public when they speak) so that any strident words from the ME population even if done in equal measure will not be equal in result.

But also, for anyone who has been severely sick and for a long time the ability to control and contain emotional content becomes a lot of work requiring a great deal of energy (same amount of energy as a healthy but because we have so much less it becomes a great deal) so that speaking out of turn can in some cases be an actual result of illness. Even healthy people occasionally loose it outside their normal functioning this happens often when they are tired. It could even be viewed as PwME exerting a great deal of restraint. Which is appropriate of course, I'm just saying it comes at somewhat greater a cost.

 

[BurnA]

I know you don't like the CMRC but it is not accurate or fair to say that it has achieved absolutely nothing

It has held three successful and well attended two day research conferences that have succeeded in bringing in people who are new to research into ME/CFS,including a number of medical students (that the MEA funds each year)

It has developed links to the MRC, other research funding organisations (e.g. Arthritis UK, Wellcome Trust) and the pharmaceutical industry

It has brought together a group of experts in -omics to carry out the largest ever study using these technologies - again I know you don't like MEGA and I also have concerns and questions

It has started develop various forms f=of practical assistance for young researchers, especially in relation to obtaining research funding
And there are other things - but I'm not going to write another 500 words tonight…

Would like to know of the other things because that list is a lot worse than I imagined.

How about a roadmap to curing ME ?
How about a stated goal or systematic plan to increase funding every year for ME research ?
How about using the SMC to promote research awareness and attract new researchers ?

Maybe it's a topic for another thread, but as it stands, if "links to the MRC" are being claimed as an achievement, it sounds like straw clutching to me.

 

[lilpink]

Worth having a look at this (as it names names) if you have not already seen it:

http://www.meactionuk.org.uk/Openness_-_Part_2.htm

The final section deals with 'malicious harassment'

That's very old news. Anyone would think the recent references (in this thread) to such were about recent happenings. Here's an idea... where individuals want to use the 'harassment' card they should a) publish the content (with or without names redacted) and b) make it clear they are talking about historical examples or new / current examples. Otherwise the odd, frankly disturbing, behaviours of 3 people over 7 years ago can be mistaken for continued and new 'abuse' thus creating a narrative which is very skewed indeed. It becomes a rather more insidious version of the Chinese Whispers parlour game.