Your blog won't accept my comment
@Lucibee (I know, sorry
)
I'll add it here for now.
Thanks for the post Lucy.
"...comparing conventional treatments for chronic fatigue, cognitive behavioural therapy for example against a treatment which was very much endorsed by parts of the patient community but very sceptically received by the more scientific community and that was the adaptive pacing therapy."
Was the patient community representative of the wider patient community? Did you try to find out?
How was adaptive pacing therapy 'much endorsed' when it was invented for the trial? Who endorsed it? Where is the evidence of endorsement?
"Well we have been deluged with dozens of letters raising serious objections to the conduct and interpretation of the study."
How is 'dozens' a deluge?
"...in a population our critics claim contains a substantial number of people who are bed ridden."
If the population does not contain a substantial number people who are bed ridden, what was the population studied in the FINE trial? Where is the evidence that there is not a substantial number of bed ridden people?
"Given the fact that treatments are being offered which do regard chronic fatigue as reversible then that somehow undermines the view that ME is a neurological condition."
Why mention "chronic fatigue"? What does it have to do with ME/CFS? Chronic fatigue is a symptom of many illnesses, it does not make those illnesses ME/CFS.
"...So this study is we are told breaching the Declaration of Helsinki."
The breach of the Declaration of Helsinki was due to the investigators not gaining informed consent of the participants, and not warning them of potential harms involved in the treatments.
"Indeed, and I think this is where one sees a real fracture in the patient community. One is seeing a very substantial number of patients very willing to engage in this study, desperate to get good evidence on which to base their future treatment…"
There is a group of patients who are not desperate to get good evidence on which to base their future treatment? Where is the evidence of this?
As a participant in a group of patients who don't praise the PACE trial, I see a constant questioning of evidence and a enthusiasm for good evidence on which to base future treatment.
"…but one sees a fairly small, but highly organised, very vocal and very damaging group of individuals…"
Now I'm part of a damaging group of individuals! What am I damaging? Should I be stopped? If so, how? Why?
What is wrong with groups from civil society being organised and vocal? Would you prefer them to be large, unorganised and quiet? Why?
Lastly I would like to ask Richard Horton:
- What if you are wrong?
- Have you considered that?
- If you are wrong, how would you expect people to react?
