United Kingdom: Kings College London; South London and Maudsley NHS Trust

Their allegience bias must be very strong, or they are not competent to be doing anything with CFS, or, and more likely, they know but are so committed to this path they cannot see another ... or? What are their financial ties?

 

Oh for .... sake! Why are they unable to hear, dizziness, sound sensitivity, clumsiness, poor coordination, muscle power, cognitive difficulty... etc etc etc all get worse the more i do. 90% of what she's written is literally backwards. Its opposite to the reality. Not to mention infantilising. This is what happens when people who are arrogant & think they know everything look at lists of symptoms and hypothesise, without actually checking the reality with those who actually have the condition (as opposed to those who have projected your reinvented condition onto because anyone with a bit of fatigue can now be dx by your criteria and you see nothing wrong with that because you know what causes it all). If anyone has the effrontery to suggest you are wrong you just say 'oh they have an ulterior motive for wanting me to be wrong, such as 'secondary gain'', it cant possibly be that i am just. WRONG

I do wish they would learn about the condition they claim to be experts on.

 

In June 2004, the Editor of BMJ Rapid Responses approved a Rapid Response in which I had included the entire text of that article:

https://www.bmj.com/rapid-response/2011/10/30/jam-both-sides

Rapid Response:

Jam on both sides?

Suzy Chapman
10 June 2004

I'd like to draw readers' attention to the following document which can be found on a website called "Chronic Fatigue and Chronic Fatigue Syndrome A Practical Self Help Guide". It is entitled:

"PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME Explaining the symptoms of CFS: An article explaining the physiological basis of some of the more common, and some of the more obscure, symptoms that trouble CFS sufferers"

This is such a curious document that I have taken the liberty of reproducing it in full since I feel it deserves a wider audience.

The document lists many of the symptoms which may be experienced by sufferers of CFS and goes on to explain every single one of them in terms of "deconditioning", "faulty illness beliefs" or anxiety.

And it makes some very sweeping statements indeed, for example:

"As we said there is nowgood [sic] evidence to show that all of the above effects are reversoble [sic] by a programme of gradual physical rehabiliation [sic]. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuuses [sic] on it, and the more stress this generates, which in turn worsenes [sic] the symptom."

Is this document referenced throughout with research papers? No, not a single reference.

Has it been carefully checked for typos, as one might expect in a serious and professional document? Apparently not.

So has this document been posted on the net by a 'non professional'? Well no, it is taken from the website of Kings College Hospital's Chronic Fatigue Syndrome Research and Treatment Unit.

And this is where is starts to become confusing, because click on the link "About this unit and its research" and you'll be taken to a page listing recent research papers - neuroendocrinological research, neuropsychological research, research into infectious agents, epidemiological research, immunological research etc.

As the site says, research costs money and grateful thanks are expressed to a number of organisations who support the Kings CFS research programme - The Linbury Trust, Pfizer UK, Shire Pharmaceuticals, South Thames Locally Organised Research Scheme and The Wellcome Trust.

So here we have a CFS Research Unit headed up by Professor Simon Wessely with Dr Trudie Chalder and colleagues beavering away on the one hand on costly research programmes into an illness the symptoms of which they are simultaneously peddling on the Unit's own website as being caused and maintained by nothing more than "deconditioning", "faulty illness beliefs" and anxiety - and which are all reversible by "a programme of gradual physical rehabilitation".

It's a rum do, as my old grandad used to say.

http://www.kcl.ac.uk/cfs/symptoms.html

PHYSIOLOGICAL ASPECTS OF CHRONIC FATIGUE SYNDROME

etc.

 

Examining each of these options carefully.

One possibility exists as follows.

1-3 “Trigger” potential factors of
4 “Perpetuation” prime factor of

Another

4.= Trigger + Perpetuation.

As I explore with rigour these options my outlook becomes more “robust”. Leading me to speculate that perhaps an under explored motivation might be

5. In it for the rewards to own emotional circuitry. ie this is really fun. My researcher brain is a good one. Your sickie one? Umm. How shall I put this. In an acronym perhaps?

Should I -however gently- chose to chasten myself, so that you all might not merely guess but actually perceive my humility in action?

Well then I might suggest that the above calculation may one day prove all “too evidenced based” and “inaccessible” for patients.

So In layman’s terms?

Well, no. Sadly I couldn’t possibly. I am just too “scientific”.

If I were -however hypothetically -on a basic simple level along side the economically minded….

…..but fortunately I am too “complex” for such a direct conclusion.

 

OMG that spelling! What utter incompetence. Made me sic [sic] just reading it. @Dx Revision Watch I hope you had a macro key for all the "[sic]" you needed to add.

 

They did eventually clean up those typos but the text stood like that until at least June 2006. (Wayback can't locate the URL beyond that date, so I expect the text was moved to another page.)

Pauline Powell was an investigator on the FINE Trial.

 

I had a random browse through some of the names in the rogues gallery.

Even that isn't honest. There are loads of people on this list who have had nothing to do with CFS or any kind of BPS bullshit (for example, some do research on racial inequalities in healthcare and other actually worthwhile stuff). They've been trotted in to bulk up numbers - no doubt to impress someone on some funding panel with their "team of 50 something professionals"

 

Oh no... from a link on that page....

https://www.kcl.ac.uk/news/kings-co...dy-on-long-covid-in-children-and-young-people

 

Photo by Nick Kwan on Unsplash

 

Not sure where else to post this but I think it's the same unit:

https://twitter.com/user/status/1463178380749254673

 

https://www.flexproject.co.uk/study.html

 

That Flex project is not specifically about ME :

but if GPs are encouraging ME patients to join then any results (which we can all assume will be manipulated to give the results the researchers want) will be framed as an ideal treatment for people with fatigue from any cause including people with ME, depression, chronic disease of any kind, cancer, MS...

This strikes me as being a back door for getting around the new ME/CFS guidelines. King's College London is trying to keep itself relevant in this field and is failing badly (in my opinion).

I loved this comment from the thread @rvallee linked to :

 

Chief Investigator Dr Alicia Hughes
https://www.flexproject.co.uk/info-sheet.html

latest publication

• Illness-related cognition, distress and adjustment in functional stroke symptoms, vascular stroke, and chronic fatigue syndrome
  Jones, A., Smakowski, A., Hughes, A., David, A. S. & Chalder, T., 28 Jun 2021, (Accepted/In press) In: European Journal of Health Psychology. Research output: Contribution to journal ›

https://www.kcl.ac.uk/people/alicia-hughes

next-gen

 

I gather this proposed research is being generated by studies into mindfulness and psychology/psychiatry’s belief that if people improve their “psychological flexibility” they can better cope with chronic illness (and not “burden” the health system).

Basically, mindfulness, is attending to breathing and senses, attending to the now, the moment, without catastrophising about the future or ruminating on the past, both core tenets of CBT for anxiety as this causes over-arousal, and to stop focusing on bodily symptoms as your over-arousal (health anxiety) may precipitate or perpetuate them. It is believed that regular practice of this psychological habit will free up psychological space for positive emotions and experiences and cause better outcomes by becoming ingrained via neuroplasticity and pain, MUS and fatigue will decline or disappear with improved mood and anxiety.

It is a grand plan with lots of extrapolation from studies, especially from the treatment of personality disorders and Complex PTSD where it has shown effects (but only when combined with a specialised form of CBT (group delivers and weekly interpersonal therapy, known as Dialectical Behavioural Therapy). Mindfulness can be helpful with managing emotional distress but is coping mechanism not a cure.

It is now becoming the panacea for all society’s anxiety and illness. The hope is to improve the populations ability to cope with mental distress (and fix MUS and ME/CFS from our supposed personality defect and illness causing behaviours and not concentrate on the biological causation).

This public health strategy has been developed over the last 10 years and is being used in NZ across all mental health sectors and supported by our national mental health community NGO, The Mental Health Foundation (which is run by people who have or have experienced mental health problems and disorders). It is especially targeted to reduce high suicide rates, substance abuse, the effects of intergenerational trauma (witnessing violence, abuse and neglect) and an exponential rise in bullying, anxiety, self harm, eating disorder in youth populations due to social media use. In particular because the public want to move away from mental health services to less stigmatising cultural approaches, self-help and social support models. Mental health services have been chronically under-resourced (glaringly so compared to all other medical services, very hard to get imaging, advanced tests or treatments) and now has become severely restricted due to increase in need.

 

I'm not sure whether you will be aware that one of the Oxford psychologists, I now forget which one, who co-authored the 1995 Surawy paper on the Oxford model of CBT for CFS, went on to develop a specialty im mindfulness and was a leading exponent of the practice.

 

yes, it is all pervasive in psychology/psychiatry for pain clinics and mental health problems arising from chronic illness (not sure in NZ for MUS/somatic symptom disorders as part of consultation liaison psychiatry) but highly likely as well as acceptance and commitment therapy.

I expect Kings College and Oxford will do some shonky trials.

 

Ive never quite managed to see how living in the now helps to cope with abuse, neglect, poverty, violence etc….
It strikes me as incredibly cruel to suggest that people would/should/could be able to cope without distress if they just changed their mindset.

 

. Some people find it useful to use mindfulness techniques while processing trauma with a therapist. Of course it does nothing to change people’s social circumstances but has helped some people and their children escape abusive partnerships or families.

I totally agree, it is not a coping technique for abuse, poverty, violence, neglect, only improving people’s life through social and financial support can do this.