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The title of this thread has been changed. Could this be amended to spell 'Lightning' correctly please?
Thanks.
Jenny
The title of this thread has been changed. Could this be amended to spell 'Lightning' correctly please?
Thanks.
Jenny
A survey by Action for ME revealed a third of people with the condition who had a treatment called graded exercise therapy, also reported it made them worse...
...However Dr Esther Crawley, an ME specialist based at the Royal National Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice guidelines, dismissed the findings, saying the survey was unreliable.
“This survey is based on a biased sample of people who have had an issue with treatment and we cannot deduce who had graded exercise therapy delivered by a specialist, as Nice recommends,” she said.
But while Action for ME accepted the treatment could help some, it said that 34 per cent of ME patients in its survey said graded exercise therapy had made their ME worse.
If 34% of AfME members said that GET made their ME worse, then I hope that AfME are going to stick by their members, and not tow the establishment line.
One can be made worse by GET and it's more than a "setback" - you might not get over it. "Setback" is more clinic-speak.Sir Peter Spencer of Action for M.E. summarised the main conclusions from a very
large survey of over 2700 respondents in 2008. Key concerns included:
the attitude of a significant proportion of GPs; the way in which the current system
fails the severely affected; the difficulty that many people have in even getting to
specialist services and the lack of availability; diagnostic times have improved very
slightly over the last 6 years but are still far too long; the fact that Graded Exercise
Therapy demonstrated an alarmingly large percentage of people who reported that it
had given them a setback and the need for further work; lack of ongoing support once
people have been through their package of treatment.
Dr Greensmith of ME Free for All has a letter about this in the Bath Chronicle - comments can be left if you register:
http://www.thisisbath.co.uk/news/ne...cacheBust=6NB6wK7YgQMX&success=true#community
This is really something we all need to mobilize on here, its bad enough the issues we have to deal with as adults but to force this harmful approach onto children is pure brutality.
...I say lets support our friends who choose to try this system. It is up to the participant to sign on for the risks, it is not our job to prevent them from trying something new.