Current ME campaigns

Update on my progress with the infra-red and naltrexone; The infra-red and Naltrexone hasn't quite had the magical affect I hoped it'd have but obviously I haven't been under the best external conditions for miraculous recovery; first a cold, then the loss of a loved one. I have however made small progress with walking as I now walk around downstairs and in my room a bit whereas before I was completely wheelchair bound. This is mostly due to feeling less dizzy

Any improvement has also been hampered by my sudden complete loss of faith in my sleep pattern. Its alright most of the time just when I'm planning to do something special like, for example, last Saturday I planned to go on a badger workshop and I want to be at my best I suddenly become terribly afraid I'm going to sleep badly which of course stops me getting to sleep

After my cold I had to start building up my tolerence of the infra-red cocoon all over again. I'm now back to being able to use it for as long as before ( 6 mins) though happily. I'm on the full dose of Naltrexone too, 4.5 ml, compared to 1ml when I started. I was very worried when I first caught my cold that my sicky feelings were side affects of my treatments so at least its one small releif that it wasn't.

XMRV; XMRV is a newly discovered retrovirus, related to HIV, that is thought to cause cancer. It has been found in a high proportion of CFS/ME sufferers, according to a study in America. Subsequent research trials in Europe though haven't found XMRV in many of their research subjects, leading to debate, but this could be to do with the differences in diagnoses in the two countries; America has a much stricter (and possibly better) diagnosis criteria than Europe

America is also doing a much better job of dealing with XMRV.  It has commisioned top pathogen hunter Dr Ian Lipkin to carry out further XMRV research whilest the UK officials have merely stated "no public health action is required at this time". It is thought to be transmitted by blood so contaigan could spread through blood transplants.

I think leaving it untill a crisis comes up is a bad idea so have been joining in a campaign to lobby the UK government to take action

"I'm sending this E-mail to express my concern at the government
decision not to undertake research into XMRV as a current priority.
XMRV is a retrovirus, related to AIDS and lukemia. Research suggests
that it could be involved in causing both cancer and ME, common
illnesses in this country. I know these are tough finacial times but I
think the governments decision not to take XMRV seriously, RIGHT NOW,
could have terrible repercussions in the long term"

This is the message I repeatedly sent Andrew Lansley, Secretary of State for Health, Sally Davies, Chief Medical Officer at the Department of Health and John Savill, Chief Executive of the MRC most days for about a fortnight. Though I don't think XMRV is the whole answer to the underlying cause of ME I think all avenues should be explored

Worldwide petition to get access to secret ME/CFS files; This is another campaign I've championed recently. It was started by Dr John Greensmith @ ME free for all whom I'v had reason to talk to in the past. The secret files are held by the Medical Research council and will currently not be available to the public till 2072

For more infomation and if you wish to sign it click here  http://www.thepetitionsite.com/264/--if-gte-mso-9xml-wworddocument-wviewnormalwview-wzoom0wzoom-wpunctuationkerning/

I beleive that with so little infomation currently around on ME, anything that is there should be open for people to read and learn from

  http://www.mefreeforall.org/index.php?id=1