Radio on ME/CFS Sat 5th Nov 9-10amGMT

[Wildcat]

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@slysaint
Wildcat said: ↑
Its clear that the UK Government is intent on using psychotherapy (but only CBT) to get sick and disabled people "Back to Work"

@slysaint wrote: No, you don't say(?) It's all over the various Disability/health guidelines..............next phase is to 'join up the two' ie identify people who are often off sick and give them a dose as well.

Yep - PWME were the Mine Canaries... and we predicted what is now taking place.

UK People with ME whose brains had recovered enough to read have been warning the wider sick/disabled community for well over a decade. We could see it coming years before official Austerity started. Some PWME were in the vanguard of informing disability rights orgs (Black Triangle, DPAC) as UNUM, the Cardiff Uni UNUM Centre, and DWP/Benefits Agency, documentation indicating which direction things were going had been circulating in the ME community for years. Hardly anyone outside the sick/disabled communities listened .... not enough are listening now.
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[anniekim]

Yes I do agree. Perhaps I should have clarified a bit better: "It is still not directive, but failed/damaging 'supportive' ".

Thanks @Barry53, apologies for misunderstanding you

 

[anniekim]

Seeing as it's Wikipedia, someone could correct with reference to controversy etc...


No sorry if I was unclear. I was trying to say much the same as you. Also that if this was done from a different agenda, supporting moderate pwme online isn't necessarily a bad idea (it is often what we're doing in a way). The general idea she is selling to the media sounds like a good idea, and we sound weird opposing everything.

There could be some wisdom in trying to identify what we could agree with before going on to criticism eg "for pwme who can tolerate screens, it is better to support them online than make them travel to an appointment, while effective treatment is not yet available on the NHS. However, we strongly object to this research being done in a way that suggests CBT is a treatment for ME. It is not. If it is focused on a requirement to increase activity as is suggested, it can also be harmful. Previous research has shown this to be ineffective, in contrast to exciting developments in biomedical research, which is where public research money should be focused"

There are different forms of CBT, all of which are inadequate for dealing with ME, let alone suggesting it is a treatment. A form of CBT based on their belief in false illness belief is toxic. It can lead to self blame and guilt for patients when they don't improve or relapse (similar issues with the Lightning Process). It is setting people up to fail because they don't have the power of control suggested. it is actually therapy which creates a delusion rather than challenging it.

Normal CBT to do with coping with chronic illness uncertainty and loss could have some limited value, but is too shallow for the complexities of what we have has to deal with. This is a much bigger issue than ME. When I was well enough to work, I was in a meeting with local professionals who support child wellbeing in various ways. The psychologists/counsellors were quite worked up about the emphasis on CBT for all sorts of things. It is seen as a cheap, quick fix which is why government like it so much. They had concerns that if all new recruits are just delivering CBT, the skills required for the deeper psychotherapies could be wiped out within a generation. Presumably when we want to swing the other way psychotherapy is hard to learn just from books.

So when I said counselling rather than CBT that was what I meant. IF it was proper counselling over Skype that could be a great offer. I didn't properly explain that I know that isn't what is on offer!

Thanks @Jenny TipsforME for clarifying. Sorry can't write more than a little bit today without huge surge in symptoms.

 

[slysaint]

One of the questions in her interview was 'what would you do with a million pounds' to which she gave and enthusiastic reply about a big (MEGA) study into CFS...........what he should have then said was 'so why didn't you use the 2-3 million you've already had to do any 'big biological research'?

 

[Jenny TipsforME]

'so why didn't you use the 2-3 million you've already had to do any 'big biological research'?

This is the big logical flaw isn't it? If ME is clearly biological but we don't know how to treat it yet, I agree there is some merit in the idea of working out how best to deal with it in the meantime (eg Tips for ME ). We don't want to leave pwme with no support. However, there is no logic in ploughing research money into further psychosocial interventions if you have no confidence that this is the basis of the problem or the proper cure/treatment. At best from her description CBT/GET are a temporary bandaid. There will be other biomedical studies published before FITNET so the timing issue is empty.

Either she thinks the psychosocial actually is the issue after all, or the study is just detracting from real progress on the basis of her own arguments.

 

[slysaint]

My brain's not working too well today so I'm struggling to get the words to flow in the right order (and spelling), but I think there needs to be an easily understood succint phrase to explain the whole BPS approach to ME. So this way in any discussion (media coverage) it avoids all the confusion (particularly for non ME sufferers or those who are maybe not as in-the know as PR members).
For example: They believe that although the trigger might be of biological origin, the illness itself (ie ME/CFS) is psychological.
This is what is in the Wessely Guide and what White, Crawley etc base all their trials on.
So no matter how many times AYME or Crawley insist that they believe ME/CFS is not psychological and therefore what they propose is all for the good of ME sufferers, they can be pulled up on their exact interpretation.
Hope this makes sense.
If anyone can think of a better way of putting it.........feel free to do so (I know you will anyway)

 

[Esther12]

My brain's not working too well today so I'm struggling to get the words to flow in the right order (and spelling), but I think there needs to be an easily understood succint phrase to explain the whole BPS approach to ME. So this way in any discussion (media coverage) it avoids all the confusion (particularly for non ME sufferers or those who are maybe not as in-the know as PR members).
For example: They believe that although the trigger might be of biological origin, the illness itself (ie ME/CFS) is psychological.
This is what is in the Wessely Guide and what White, Crawley etc base all their trials on.
So no matter how many times AYME or Crawley insist that they believe ME/CFS is not psychological and therefore what they propose is all for the good of ME sufferers, they can be pulled up on their exact interpretation.
Hope this makes sense.
If anyone can think of a better way of putting it.........feel free to do so (I know you will anyway)

The trouble is that they can be so evasive it's difficult to be concise in a way that provides them no wiggle room.

I don't think they could dispute this, but it really says very little: They believe that although the trigger might be of biological origin, psychosocial factors often play an important role in perpetuating patient's ill health.

It's so difficult to get the details right and concise on the model underlying CBT/GET and their treatment of CFS that I think it's normally better to focus criticism on other areas. Also, they can often twist things to patients being afraid of the stigma of psychological treatments.

 

[eafw]

They believe that although the trigger might be of biological origin, the illness itself (ie ME/CFS) is psychological.

They believe that although the trigger might be of biological origin, psychosocial factors often play an important role in perpetuating patient's ill health.

Since the SMC briefing last Monday they are actually putting out a slightly new message: this is a biological illness which can be treated with behavioural intervention, because CBT alters biology and is therefore as good as a pill (for this illness which we are saying is biological)

The articles and interviews with Crawley make this point quite explicitly. So this is a little bit of a shift, they are not saying the illness is perpetrated by psychology and therefore needs psych treatment they are declaring CBT to be a biological treatment. It allows them to neatly dismiss the arguments around psych or not and means they aren't left looking completly stupid as the biomarkers come through.

The scam they are perpetrating now is "CBT alters biology". So even if we had DNA and omics results tomorrow, they would still be saying - we can treat this biological illness with CBT which is a biological treatment.

 

[slysaint]

psychosocial factors often play an important role in perpetuating patient's ill health.

Wessely wrote:
"factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse)."

The 'hit and run' scenario.
So X (biological) makes you ill; but Y (psychological) keeps you ill.
Their therapies are aimed at Y.
Y is the name of the illness CFS (I think they only throw in ME as a platitude)

this is a biological illness which can be treated with behavioural intervention, because CBT alters biology and is therefore as good as a pill (for this illness which we are saying is biological)

So is she now saying that Wessely was wrong?

 

[Esther12]

Wessely wrote:
"factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse)."

The 'hit and run' scenario.
So X (biological) makes you ill; but Y (psychological) keeps you ill.
Their therapies are aimed at Y.
Y is the name of the illness CFS (I think they only throw in ME as a platitude)

So is she now saying that Wessely was wrong?

That 'may have' is important. Wessely tends to say very little in a lot of his public statements. I get the impression he has been rather more forthright when he thinks he's off the record!

 

[eafw]

So is she now saying that Wessely was wrong?

They shift position as is expedient while refusing to be held to account to any contradictory statements (current or previous). This is why it is hard to come up with "a succint phrase to explain the whole BPS approach". Their approach changes and is not internally consistent either.

So alongside the "CBT is a biological treatment for a biological illlness" they'd likely say, if asked, "well of course psychological factors can play a part, everybody knows that mind and body are intertwined".

 

[Stewart]

They shift position as is expedient while refusing to be held to account to any contradictory statements (current or previous). This is why it is hard to come up with "a succint phrase to explain the whole BPS approach". Their approach changes and is not internally consistent either.

One of the (many) things that's been bugging me about EC's latest round of interviews has been her repeated vague suggestion that CBT is effective in changing the biology of ME patients with low cortisol. It's been bugging me because I'm certain that a couple of prominent, UK based, ME researchers co-published a paper a few years back in which they demonstrated that CBT was less effective on people with hypocortisolism - which would surely make it a perverse choice as a 'first line' treatment for adolescents with the condition.

If only I could remember the researchers' names.... oh yes, that's right. It was Simon Wessely and Trudie Chalder.

http://simonwessely.com/Downloads/Publications/CFS/198.pdf

I'm sure there's an innocent explanation. I imagine Crawley is just unaware of their work in this field...

 

[Jenny TipsforME]

I agree that explanations are changing so there is little point relying on quotes from Wessely earlier than say 2015. The radio interview was useful in terms of hearing what the current explanation is.

The 'hit and run' scenario.
So X (biological) makes you ill; but Y (psychological) keeps you ill

This was the old version but they seem to have quietly accepted this is wrong. we should probably all stop mentioning it, as it is wrong, and no one supports this version anymore as far as I know. When we mention ideas like this to refute them we can introduce an element of doubt in people's minds (ie an own goal).

declaring CBT to be a biological treatment. It allows them to neatly dismiss the arguments around psych or not and means they aren't left looking completly stupid as the biomarkers come through.

Yes seems to be new approach

well of course psychological factors can play a part, everybody knows that mind and body are intertwined".

Of course there's an element of truth in this. But when it comes to cancer and MS no one expects it to be sufficient!

 

[slysaint]

they seem to have quietly accepted this is wrong

So isn't it about time they told the rest of the medical profession?

 

[alex3619]

I agree that explanations are changing so there is little point relying on quotes from Wessely earlier than say 2015.

This is the history of psychogenic medicine. It changes and adapts. They fit their story to the current medical understanding, and it keeps changing until its broken. Then they look for other diseases, though they are always looking for other diseases.

 

[ukxmrv]

Since the SMC briefing last Monday they are actually putting out a slightly new message: this is a biological illness which can be treated with behavioural intervention, because CBT alters biology and is therefore as good as a pill (for this illness which we are saying is biological)

I think this is a similar line to the one given by Trudie Chalder to the Gibson Inquiry in 2006. That is that CBT can alter the HPA axis. It was also said that that CBT could fix the gene expression pattern found by Dr Kerr.

"At the Oral Evidence session taken by the Gibson Inquiry into ME/CFS on 7th June 2006 at the House of Commons, Chalder maintained that CBT can reverse the documented HPA axis dysfunction found in “CFS/ME”. Gibson Inquiry member Lord Turnberg (the former Professor Sir Leslie Turnberg, President of the Royal College of Physicians and a staunch Wessely School supporter) stated at this same Oral Evidence session that everyone with “CFS” gets better with CBT and that this has been “proven”.

Lord Turnberg suggested that Dr Jonathan Kerr from the Department of Cellular and Molecular Medicine, St George’s University of London (who was also giving evidence) should join forces with Trudie Chalder to look at how the genes of “CFS/ME” patients alter and recover with CBT. It was clear to all who heard this exchange that the Wessely School wanted to get into gene research and that they had got the next stage of their “CFS/ME research” well mapped out. "

I don't think any patients were allowed to the oral evidence part by TC however I was there at a later meeting when Lord Turnberg stated that CBT could change gene expression (at least that had been a claim by TC to the Inquiry). He certainly seemed to believe it.

It's clear that the psych lobby have been selling CBT as a way of changing physical symptoms and tests for some time. That's where the idea of physical testing for abnormalities in ME falls down as a way of getting rid of this malign influence. If CBT is always the cure...

http://www.meactionuk.org.uk/COERCION_AS_CURE.htm

 

[AndyPR]

https://spoonseeker.com/2016/11/10/letter-to-dr-phil-hammond/

Following last Saturday’s interview with Prof Esther Crawley on BBC Radio Bristol, I sent the following letter to Dr Phil Hammond who hosted the programme. I think it explains a large part of the reason why patients with M.E. have problems with Dr Crawley and why we don’t want her involved with the proposed MEGA study:

Dear Dr Hammond

Thank you for putting the concerns of ME/CFS patients to Prof Esther Crawley in your interview on Radio Bristol last Saturday. Unfortunately, as I have tried to explain as briefly as possible below, her responses were largely factually incorrect. I wonder if next time you have her on your programme, you could also invite the investigative journalist David Tuller whose original in-depth analysis brought the many and in some cases outrageous defects of the PACE Trial to wider attention. This led to numerous condemnations of PACE from eminent researchers in the field of ME/CFS. Here are just two of them:

Prof. Ronald Davis of Stanford University said: “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”

Prof. Jonathan Edwards of University College London said: “It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”

PACE’s recommendations for the use of CBT and graded exercise therapy (GET) for ME/CFS have frequently been reported by the British media but the important work of Mr Tuller has been ignored, so grossly distorting the information which has been made available to the British public. It would be an invaluable service if your programme could help to redress this imbalance.
....

 

[slysaint]

https://spoonseeker.com/2016/11/10/letter-to-dr-phil-hammond/

If I could triple like this I would

 

[Cheshire]

https://twitter.com/i/web/status/797856821809659905

I'm at loss to understand what he's intending to do...

 

[AndyPR]

https://twitter.com/i/web/status/797856821809659905

I'm at loss to understand what he's intending to do...

To be fair to him he's donated £50+Gift Aid. Perhaps he's doing it to wind Esther up. She must hate the idea of money being donated by an employee of hers going towards one of those pointless biomedical research studies that is actually trying to replicate results from elsewhere.