Yeah, I agree. But they would probably dismiss a patient group survey as biased or something.
As did Dr Esther Crawley in response to the joint patient survey carried out in 2008 by Action for M.E. and AYME.
See:
Dr Esther Crawley condemns AfME Survey as “unreliable”
May 16, 2008
http://meagenda.wordpress.com/2008/05/16/dr-esther-crawley-condemns-afme-survey-as-unreliable/
So if Dr Crawley should ever quote this survey in relation to Lightning Process, she will be quoting from a survey which she has already denounced as being "unreliable".
Min has raised the very valid concern that the severely affected may be underrepresented as they may not be well enough to complete an online Monkey Survey and may not have anyone who could act as amanuensis for completing the paper questionnaire, either.
Another criticism of surveys conducted through patient organisation websites and magazines could be:
are those who have had negative experiences of treatments more motivated to complete a survey than those who have had more positive outcomes; also, those who have recovered following treatments or without treatment may no longer visit the MEA's website or maintain their membership of the ME Association and would not have received a copy of the survey.
Action for M.E. are currently calling for comments on a draft questionnaire in relation to a survey on GET and GAT:
http://www.afme.org.uk/news.asp?newsid=853
Survey reference group: update
28 May 2010
Action for M.E. has been looking for volunteers with M.E., who have experience of graded exercise therapy (GET), graded activity therapy (GAT) or exercise on prescription, to comment on our draft questionnaire, as reported in our news item of 21 May.
Draft questionnaire:
http://www.afme.org.uk/res/img/resources/DRAFT GET QUESTIONNAIRE 2010.pdf
The deadline for comments is 18 June.
Please note that the final survey will be launched 1 July and it will close 1 September, rather than in August as previously stated.
For further information please contact our Policy Officer, Tristana Rodriguez (email address on site).
http://www.afme.org.uk/news.asp?newsid=847
Survey reference group
21 May 2010
Have you tried GET, GAT or exercise on prescription?
We are looking for volunteers with M.E., who have experience of graded exercise therapy (GET), graded activity therapy (GAT) or exercise on prescription, to comment on our draft survey.
Draft survey at:
http://www.afme.org.uk/res/img/resources/DRAFT GET QUESTIONNAIRE 2010.pdf
The aim at this stage is not to complete the survey, but to identify any mistakes, omissions or other problems, before we launch the survey online and in final printed format.
The deadline for comments is 18 June. The final survey will be launched in July.
Action for M.E. Chief Executive, Sir Peter Spencer, says:
“We would like to follow up on our 2008 Health and Welfare survey by further investigating the experiences of people who have tried the physical rehabilitation therapies, GET, GAT or exercise on prescription.
“The results of this survey will inform our response to the PACE trial, expected this autumn and any subsequent review of the NICE guideline.
”If you have experienced GET, GAT or exercise on prescription but are not able to comment on the survey at this time, I hope you will complete the questionnaire when it goes live in August.
“Further details will be posted here in due course.”
Once you have read the survey, please send any comments to our Policy Officer, Tristana Rodriguez .
