RACP Guidelines for CFS

Alexa McLaughlin

31 July 2001

Dear Dr Loblay

I wanted to apply my editing skills to identify poor logic and find words to alternately express what I and others believe to be appropriate and accurate. I also hoped that my cognition would be up to relying on other peoples' memory of relevant literature to synthesise a comprehensive re-write. I can't this month, but maybe later – would you consider it then?

My well-being, if not my life, is dependent on the guidelines being right but even this powerful motivation couldn't lift me from cognitive relapse. I can still express previously developed thought, but at the moment I can barely comprehend other detailed submissions, let alone create one of my own. So I make only these points:

  1. I support the submissions of the consumer organizations and the concerns raised by consumers.
  2. I agree that some things are better expressed in version 2 compared to version 1.
  3. Many things are still terrible and most, if not all, the outstanding issues were raised and evidenced in the 1997/98 submissions. It is regrettable that the submissions prepared with huge effort by so many sick people were only selectively applied, along with the medical literature.
  4. There are many flaws of logic. For example, it is acknowledged that it is likely that there is a heterogeneous population, which indicates that there would be sub-groups with different causes, symptoms, diagnoses and/or treatments. To then say that because no diagnostic tool or treatment is effective for everybody, there are not yet any useful tools or treatments for anybody is therefore illogical. These flaws would make the working party a peer-reviewed laughing stock if they are not fixed.
  5. Cognitive difficulties are barely mentioned, let alone comprehensively discussed.
  6. There is still an unevidenced bias towards psychiatric diagnosis and management together with a failure to deal with many physical issues.
  7. The guidelines are still dangerous for consumers.

They should be withdrawn before either draft causes more harm to consumers, and then re-written. The next draft should be logically consistent and reflect both consumer concerns and all the relevant medical literature. It should be peer-assessed and there be enough time for all involved to work on it properly.

I urge the working party to either pass the work over to a new group or to thoroughly work through the first and second round of submissions to produce a draft which truly reflects the existing evidence and recommends useful strategies, including advocating additional research, where evidence is lacking.

Yours sincerely

Alexa McLaughlin

 

Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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