1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Daisymay, Jan 26, 2013.

  1. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    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-patiƫnten. Ervaringen van de achterban van patiƫntenorganisaties 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.
     
    ukxmrv, Valentijn and Roy S like this.
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    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.
     
    Min, Shell, Valentijn and 1 other person like this.
  3. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,876
    Scotland
    Can I award you a gong for saying that, Enid?

    "Lady Enid" ...sounds rather good, doesn't it?:)
     
    Shell and Valentijn like this.
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    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.
     
  5. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,876
    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:
     
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    Follow the science. Those long in the tooth here know the difference. Just keep rooting for all.
     
    barbc56 likes this.
  7. WillowJ

    WillowJ Senior Member

    Messages:
    3,148
    Likes:
    2,851
    WA, USA
    because there is no disease such that treatment designed for 'fear avoidance' and deconditioning will cure it.
     
    anniekim, Valentijn and Min like this.
  8. anniekim

    anniekim Senior Member

    Messages:
    594
    Likes:
    200
    U.K
    Thanks Willow, your reply makes absolute sense
     
    WillowJ likes this.
  9. Research 1st

    Research 1st Senior Member

    Messages:
    118
    Likes:
    214
    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:




    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
     
    Shell, biophile, meadowlark and 3 others like this.
  10. barbc56

    barbc56 Senior Member

    Messages:
    1,579
    Likes:
    975
    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
     

See more popular forum discussions.

Share This Page