Monday, 14 December 2009

QUESTIONS ABOUT ME/CFS

The more I look into the controversy and research available about Lyme Disease the more astounded I am over the mismanagement of the illness by our Health Authorities and organisations responsible for helping us, the patients.

After being diagnosed by a top London Rheumatologist (not ME/CFS specialist) as having ME/CFS I was lucky that my GP and private specialist did not accept his diagnosis and believed my illness to be Lyme Disease. With antibiotics and only antibiotics I have recovered to nearly 100%.

I still take an interest in ME/CFS and have followed the developments recently over XMRV retrovirus with great interest, but also started to look into the politics of the illness and surprise, surprise they are as bad if not worse than they are over Lyme Disease.

Margaret Williams statement of concern is of particular interest.

http://meagenda.wordpress.com/2009/12/12/statements-of-concern-about-cbtget-provided-for-the-high-court-judicial-review-of-february-2009-m-williams/

I never quite understood what was going on over the Judicial Review into the NICE guidelines and probably never will.

However it was good to read these statements from so many good doctors prepared to support the patients cause. What a pity the Judicial Review didn't get to consider them. One day science will no doubt prove what mistakes were made by those writing the NICE guidelines and condemning patients to even worse problems than they had already fighting not just the illness but the denial of a physical condition.

I was even more surprised to read this post about Medical Research Council secret files. Or was I?

http://meagenda.wordpress.com/2009/12/11/the-medical-research-council%e2%80%99s-secret-files-on-mecfs-margaret-williams/

'As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill ill?”'

Was there some big medical cock up? If not then there certainly appears to be now!

Also this report of the APPG (All Party Parliamentary Group on ME) makes you wonder whose working for who.

http://meagenda.wordpress.com/2009/12/14/report-of-meeting-of-the-all-party-parliamentary-group-on-me-by-john-sayer/

So the most important thing I have learned from my experience is to get informed, get to know your symptoms and keep a log and be your own best advocate, guided by our doctors but not blindly following their advice, they are only human after.

1 comment:

  1. Thanks for all the info you are sharing here.

    ReplyDelete