Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

[Dx Revision Watch]

From the (summarised and public version) of the minutes of the last meeting (June 5, 2014). It would be helpful if, in these summaries of the minutes, the relationship of each attendee to the Collaborative, was delineated.

Minutes of UK CFS/ME Research Collaborative Meeting 5.6.14

These Minutes remain a draft until formally approved at the next meeting

Present:

Esther Crawley (EC)
Sonya Chowdhury (SC)
Joe McNamara (JMC)
Jan McKendrick (JM)
via phone Paul Little (PL)
Fai Ng (FN) - guest
Peter White (PW)
Charles Shepherd (CS) – left at 2.35 p.m.
Ed Sykes (ES) – arrived at 1.50 p.m.
Mary Jane Willow (MJW) – left at 2 p.m.
Carmine Pariante (CP) - guest
Stephen Holgate (SH) – arrived at 1.30 p.m.

Apologies:

Annette Brooke (AB)
Neha Issar-Brown (NIB)
Julia Newton (JN)
Peter Muir (PM)
Zoe Gotts (ZG)
Hugh Perry (HP)
Alastair Miller (AM)
Paul Moss (PM)

 

[Wildcat]

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Professor Lipkin's presence has nothing to do with the open mindedness of the Collaborative, who did not originate the idea to invite him. . His trip to Britian was crowdfunded by patients.
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[A.B.]

I think it is a big mistake to collaborate with or even tolerate psychobabblers. Even merely tolerating them gives them some degree of legitimacy. Their goals are opposed to ours, so I'm not sure what good their presence could do. What we want is biomedical research and treatments grounded in reality. They don't want that because it would invalidate their models and negatively impact their careers and funding. Simply refusing to have anything to do with them is the best course of action.

 

[Bob]

Professor Lipkin's presence has nothing to do with the open mindedness of the Collaborative, who did not originate the idea to invite him. His trip to Britian was crowdfunded by patients.

My understanding is that his trip to Britain was requested and organised by the ME Association, with assistance from Action for ME, both members of the collaborative, who also arranged for him to speak at the upcoming research collaborative conference. The collaborative, as a whole, must have approved him to speak at the conference, or he wouldn't be speaking. Yes, patients contributed towards the cost of his travel, for which the ME Association coordinated the crowdfunding.

 

[aimossy]

I feel personally that it is impossible to get ME/CFS into formal mainstream research without having to tolerate the psych lobby being part of it right now. In order to get a platform to lift up biomedical research funded by govt. realistically I feel you have to put up with that aspect. The long term goal is for more biomedical research and eventually the findings will drown out false illness beliefs. keeping your opponents close is the only way to get to them as well and they will be exposed to some impressive researchers in the biomedical area this way. I would personally prefer to give this goal and efforts a chance and want to see what comes about from it over time. Otherwise I feel it would be like shooting myself in the foot with respect to possible progress. I also feel that jumping up and down about things like this just reinforces/legitimises the psych view that we are unreasonable and irrational and in need of CBT.

 

[Wildcat]

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aimossy wrote: "I also feel that jumping up and down about things like this just reinforces/legitimises the psych view that we are unreasonable and irrational and in need of CBT."


What a preposterous idea...... intended to silence valid and cogent critique!

We are not children to be told "Naughty Naughty. Be silent or you will have to go on the naughty step".
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[Jonathan Edwards]

Certainly the meeting in Bristol on Monday (?) has the potential to do us a lot of good, and getting Dr Lipkin over will be a real boost.

I think it's important to keep our eyes on the prize, which is the goal of very considerably increased government funding overall for biomedical research into ME.

I agree. There seems to be about 12 hours of science on Monday and Tuesday. For those that are concerned there looks to be half an hour at most on psychosocial issues. The three plenary topics are infection, inflammation and epidemiology, which sounds perfect to me. There are presentations on cytokines, brain inflammation, autonomic effects, and microbes.

As Sasha says, keep the eyes on the prize. They say if you can't beat them, join them, but if you can beat them, which as things stand doesn't look too difficult, it may be quite fun to join them anyway. At least there is no harm in talking.

 

[Min]

I also feel that jumping up and down about things like this just reinforces/legitimises the psych view that we are unreasonable and irrational and in need of CBT.

Yes, we have had particularly nasty and carefully engineered slur for years from the very people the charities involved in the Collaborative choose to work with. If we don't uncomplainingly accept another 30 years their inappropriate hijacking of our neurological illness then we are unreasonable and ungrateful and possibly dangerous terrorists.

 

[Bob]

At least there is no harm in talking.

The problem is that they seem to be exceptionally good at persuading people (including almost the entire medical establishment in the UK) that they have the answers, simply by 'talking'. It's what they do, extremely successfully, for a living. Unfortunately, not everyone is as independently minded as you are, Jonathan, or as capable of assessing all the available evidence. That's partly why we are where we are.

 

[A.B.]

I also feel that jumping up and down about things like this just reinforces/legitimises the psych view that we are unreasonable and irrational and in need of CBT.

There's also another way to see things: tolerating these psychosocial explanations without protest conveys the message that they are correct.

And one certainly doesn't gain respect by tolerating abuse.

 

[Wildcat]

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Prof Edwards wrote: "At least there is no harm in talking"

I have said it before...... Profs White, Wessely Chalder etc don't really "do" medicine. They don't "do" science and don't "do" holism either, although they claim to.

What they actually "do" is Language. Or rather Language manipulation.

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As Martin Walker so humorously but incisively noted in one of his books:

“Professor Wessely should be granted a dictionary of his own, so far has he stretched the meaning of the English language while attempting to explain that ME although a ‘real’ illness, is often first imagined. He has trodden the tightrope of confusing semantics with the balance of Blondel and the focus of a train spotter.” *

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[aimossy]

I agree. There seems to be about 12 hours of science on Monday and Tuesday. For those that are concerned there looks to be half an hour at most on psychosocial issues. The three plenary topics are infection, inflammation and epidemiology, which sounds perfect to me. There are presentations on cytokines, brain inflammation, autonomic effects, and microbes.

As Sasha says, keep the eyes on the prize. They say if you can't beat them, join them, but if you can beat them, which as things stand doesn't look too difficult, it may be quite fun to join them anyway. At least there is no harm in talking.

That sounds good to me.

 

[A.B.]

I agree. There seems to be about 12 hours of science on Monday and Tuesday. For those that are concerned there looks to be half an hour at most on psychosocial issues. The three plenary topics are infection, inflammation and epidemiology, which sounds perfect to me. There are presentations on cytokines, brain inflammation, autonomic effects, and microbes.

That's encouraging. Hopefully it's as good as it sounds.

 

[alex3619]

My own observation is they (leading BPS proponents) are exceptionally competent at language manipulation. I may write a paper on this.

In the end though its the biomedical science that will give us a cure. That is the ultimate goal, at least for ME. Yet even after ME is curable as a biomedical illness, history shows that psychobabble will go on. It needs to be opposed.

 

[A.B.]

My own observation is they (leading BPS proponents) are exceptionally competent at language manipulation. I may write a paper on this.

Generally at manipulation. I think Wessely has promoted the idea of ME advocates being dangerous extremists precisely to discourage patients from speaking out against him.

 

[Valentijn]

Obviously Wessely is still involved in CFS as a result of the BPS school redefining "retired" to mean something completely different

 

[Jonathan Edwards]

I also feel that jumping up and down about things like this just reinforces/legitimises the psych view that we are unreasonable and irrational and in need of CBT.

I think you are right. Perhaps more importantly jumping up and down might put off people who are interested in biomedical research. I don't need to set my alarm clock for 6.00am to get a train to Bristol of Monday. But I will because I want to talk to Dr Lipkin, Dr Holgate, Dr Dantzer, Dr Lloyd, Dr Watson - which are the names that I can see on the programme. And stridently pessimistic and non-sequitur comments on PR are fortunately in a minority so I am encouraged to continue. But if PR is to be a place where top ME researchers log in to see what's news and get new ideas, as seems to me something to hope for, then we have to remember that, as Bob says 'not everyone is as independently minded as you are, Jonathan'. Some might get put off by the endless repetition of grouses that may be fair enough but get nobody any further on. We have some business to do: some research and treatment to get going. Some more minds to win over.

 

[Snowdrop]

"At least there is no harm in talking." (post #67)

That's exactly what SW counts on. Reasonable people continuing to try and be reasonable in a completely unreasonable situation.
It has an element of fairness and fair play, cooperativeness and collaboration all very good qualities that SW and the BPS group exploit quite consciously.

There would be no harm provided that the BPS were honestly prepared to engage with the science but that's not what this is about'.
It is about money and politics and a complete lack of integrity when personal benefit is involved. How have they managed to flourish so well despite the evidence that they are doing harm?

For someone (group) the stakes are high enough that the only thing you can expect from SW etc is stonewalling. That's his job.
And it IS harming very vulnerable people.

 

[Wildcat]

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Professor Edwards,

Are you really joining the ranks of those who contend that its the patients who have, and continue to, supposedly "put off" the researchers?
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Because that well publicised "story" of "nasty/naughty/terrorist" patients is a constructed, well orchestrated and systematic public Smear of the patients... constructed by certain researchers and the Science Media Centre...... by those very people who have been welcomed into the Collaborative. The staggering amounts of publicity over 2 years, portraying the psychosocial doctors and researchers as victims, and the patients as dangerous aggressors, was orchestrated by the Science Media Centre (by their own admission) ....It really is a grotesque example of victim-blaming by those professionals who wield substantial substantial power, and who have significant vested interests in maintaining their Power Base..

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Would you extend that cautioning of patients to not speak out or discuss onlline also to Charities who have been critical of the way the Collaborative has/is being handled, and are critical of the presence of the psychosocial researchers on it?
.

 

[Min]

I think you are right. Perhaps more importantly jumping up and down might put off people who are interested in biomedical research. I don't need to set my alarm clock for 6.00am to get a train to Bristol of Monday. But I will because I want to talk to Dr Lipkin, Dr Holgate, Dr Dantzer, Dr Lloyd, Dr Watson - which are the names that I can see on the programme. And stridently pessimistic and non-sequitur comments on PR are fortunately in a minority so I am encouraged to continue. But if PR is to be a place where top ME researchers log in to see what's news and get new ideas, as seems to me something to hope for, then we have to remember that, as Bob says 'not everyone is as independently minded as you are, Jonathan'. Some might get put off by the endless repetition of grouses that may be fair enough but get nobody any further on. We have some business to do: some research and treatment to get going. Some more minds to win over.

Those of us left permanenty severely disabled as a result of being coerced into exercise will just keep quiet then, whilst the charities purporting to represent us collaborate with even more of our abusers than we were told.