• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

Guido den Broeder

Senior Member
Messages
278
Location
Rotterdam, The Netherlands
I've just been looking in to this, and while the quotes are accurate, it's not a very good study. On my first read through, I thought that this was referring to some different (and more interesting) work.

Here's a link to the paper Mar quoted from: http://translate.google.co.uk/translate?hl=en&sl=nl&u=http://www.medivera.nl/cgtbijmecvsvanuitperspectiefpatient2008.pdf&prev=/search?q=%22Cognitieve+gedragstherapie+bij+het+chronische+vermoeidheidssyndroom+(ME/CVS)+vanuit+het+perspectief+van+de+pati%C3%ABnt%22&hl=en&safe=off&client=firefox-a&hs=901&tbo=d&rls=org.mozilla:en-GB:eek:fficial&sa=X&ei=hi8HUe-4Me7J0AX5woGQDw&ved=0CDYQ7gEwAA

I've not read the whole paper, but once I realised it was only 100 people and retrospective I decided to stop reading it.
This was an amateurish endeavour, where patients that had been disappointed by CBT were actively asked to participate in the study.

However, there is a quality study by NIVEL that reports poor results from CBT and GET in The Netherlands, too:

De Veer AJE, Francke AL (2008), "Zorg voor ME/CVS-patiënten. Ervaringen van de achterban van patiëntenorganisaties met de Gezondheidszorg", NIVEL, december

Link to the report (in Dutch): http://www.nivel.nl/pdf/Rapport-draagvlakmeting-CVS-ME-2008.pdf

The results from the patient perspective questionnaires by the Stichting ME Research (starting in 2012) indicate that nowadays ME patients in The Netherlands avoid CBT/GET altogether.
 

Enid

Senior Member
Messages
3,309
Location
UK
I do not care about reading his papers - it is perfectly clear to me and those around me the Wesselys and Whites of this world are totally ignorant - one made a Sir another now at Cambridge (or Oxford ) - may they sink for their mumbo jumbo and the institutions who accept them.
 

Enid

Senior Member
Messages
3,309
Location
UK
No awards peggy - we fight on for the real truth (revealed by proper scientists).

Actually out of their tiny minds capacity. My bro a Neurologist - only the brightest could go in.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
ok, :)
it might sound good, but it's pretty meaningless - and you wouldn't really want to be part of SS's's crowd, would you?

I'l be shoulder to shoulder with you, fighting for science. Real science, properly practised and properly analysed.:thumbsup:
 

Enid

Senior Member
Messages
3,309
Location
UK
Follow the science. Those long in the tooth here know the difference. Just keep rooting for all.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Yep, their answer very clearly shows they still very firmly believe psycho and social factors maintain the illness, complete nonsense of course, but nonsense that has caused us huge damage.

Digressing slightly, I know it is said that due to criteria used in the horrid pace trial many m.e patients were excluded, moderate and severe, what I don't understand is why the results, despite how they spin it, we're still woeful

because there is no disease such that treatment designed for 'fear avoidance' and deconditioning will cure it.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
According to the official UK DWP document released last year...

Sir Simon appears to be personally responsible for heavily influencing the established W.H.O neurological disease ME, being erroneously categorized alongside Chronic Fatigue Syndrome (CFS) in the UK, rather than remaining a separate neurological disease.

Sir Simon's words to the Department of work and pensions (DWP) in the UK now follow:

Sir Simon - ''I wrote to express some dissatisfaction with the then DLA entry feeling it did not accurately reflect the state of medical knowledge on the subject. I am afraid I feel obliged to write again following the receipt of the enclosed leaflet from the ME Association which triumphantly states that CFS/ME will now be listed under 'other neurological disorders''.

Sir Simon - '' I am disturbed that this disorder should be listed as a neurological disease''.

Sir Simon - ''I enclosed an editorial that I had written last year for a neurological journal reviewing the evidence on this subject and concluding that there was little to no point to a neurological origin of symptoms. Since then more research has been published in the leading neurological journals and nothing has happened to alter those conclusions''.

Sir Simon - ''I feel this decision represents the triumph of an effective lobby over scientific evidence''.

Sir Simon- 'If CFS/ME is to be listed as a neurological disorder I for one will begin to campaign via the mental health charities for schizophrenia and manic depression to be also listed under the same heading. Indeed there is far more evidence suggesting that these disorders have a neurological origin than does CFS/ME''.

Sir Simon - ''I also feel that this decision if it has been made reflects an undesirable stigmatisation of psychiatric disorders. The main difference between CFS and the major psychiatric disorders is neither etiological nor symptomatic but the existence of a powerful lobby group that dislikes any association with psychiatry''.

Sir Simon - ''It is also a most unfortunate message to send sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning for which there is little effective treatment and a poor prognosis. It will discourage any sensible efforts at rehabilitation''.

Sir Simon - ''As we and now many other groups have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause then it will also itself contribute to disability and poor outcome. I cannot believe that is the intention of the Department, if only on grounds of cost!''.




Source: National Archive Document BN141/1
http://www.thegracecharityforme.org/TNA/index.html

p: 17-18 (search for p.16).
http://www.thegracecharityforme.org/documents.asp


I do hope that the Countess of Mar, Professor Hooper and other effective ME CFS advocates (UK Journalist Sonia Poulton perhaps?) are aware of these very challenging quotes by Sir Simon. Fortunately they are written in an archived communication so the source is rock solid.

What is disturbing is this is a letter to a public office no less, that was previously hidden from prying eyes, 'closed' from public view. The office Sir Simon is writing to is an office that delivers financial payments by making decisions on the disabled on grounds of disability, including neurological disability.

If you have time read the following also. It's very good and clearly presented:
http://www.stonebird.co.uk/myths.pdf
 

barbc56

Senior Member
Messages
3,657
Research 1st. I can't find the editorial. I am having a difficult time reading this document because of vertigo today so I might have missed it. If you or anyone else has the editorial URL, I would appreciate it.
If it's there, just let me know as I hope I can read this tomorrow!!
Thanks in advance.
Barb