Please add your weight for ME

I don't often do this but as you can imagine this is quite pertinent to me.

ACTION NOW are running a campaign for the next 2 weeks and are asking ME patients (that's me) and their family and friends (that's you) to send the following email to ask for a change in UK policy. If you can spare a few minutes to do this, that would be great. Thanks.

Send to:

1) Andrew Lansley, Secretary of State for Health
2) Sally Davies, Chief Medical Officer at the Department of Health
3) John Savill, Chief Executive of the MRC

Contact info:

1) Rt Hon. Andrew Lansley, Secretary of State for Health
Email: lansleya@parliament.uk, DHMail@dh.gsi.gov.uk
Cc: ukpolicychange@gmail.com
Telephone: 020 7210 4850 Fax: 020 7210 5952

2) Dame Sally Davies, Chief Medical Officer, Department of Health
Email: CMOweb@dh.gsi.gov.uk, sally.davies@dh.gsi.gov.uk
Cc: ukpolicychange@gmail.com

3) Sir John Savill, Chief Executive of the Medical Research council
Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
Cc: ukpolicychange@gmail.com
Telephone: +44 (0)20 7670 5155
Fax: +44 (0)20 7580 4369

Message -

"Please would you stop allowing the policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Please instead pledge to make a definitive policy change NOW, as patients and their families and friends are waiting.

Thank you.

Yours sincerely,
{Your Name)
Friend of an ME patient

I Got A New Drug

Having had my ME/ Fibromyalgia for 7 years, I have today managed to convince my GP to let me try a new drug. Through the partner of another patient, it was suggested that I try Pregabalin, commonly known as Lyrica. I have to stop my other medication and take this 3 times a day for the next 3 weeks.
I am a bit scunnered, not with my own GP, but that again I have had to go out and find out things and tell him, not the other way aound. He told me that this medication is expensive but hey, I'm worth it! Looking it up on Wikipedia, I have discovered that it has been recommended for the treatment of Fibromylagia for 3 years. It makes me mad that this is not widespread knowledge.
Anyway, just a warning that if I seem a wee bit more doolally than usual, I can blame the drugs. Apparently the side effects are feelings of elation, changes in sexual interest (!) and "an abnormal style of walking". Oh and an increased appetite and weight gain, which kind of go together. So if you see a fat nympho doing Monty Python's Ministry For Silly Walks approaching, please say hello.

No Swings and All Roundabouts

I'm just back from seeing my GP. When I last saw him nearly 3 months ago, he had promised to refer me back to where I got my original diagnosis to see what they were offering now, hoping that they could help me. Today he told me that he had received a reply from the Infectious Diseases team (for lo! that was where I was diagnosed back in 2003) that a) the doctor who saw me has now retired and b) they are no longer seeing ME patients because (wait for it - you're going to love this)"it is not an infectious disease". So why, I asked my doc, won't I be allowed to give blood one week from now?
They have suggested that I now be referred to the Homeoepathic Hospital as they are apparently offering a multi-disciplinary service there. Has anyone else been told this? I'm not holding my breath as I know they have long waiting lists.
So I am home with another load of Amitriptyline 50g. Don't get me wrong, my doctor is very supportive and he is just as frustrated with the lack of services here. And he had never heard of XMRV til I told him!
My brain is feeling very militant (but not in a Tommy Sheridan way so rest easy - I'm too knackered to swing) and if the flesh is willing, I've half a mind to go and try to give blood on Saturday and before they take it (if they do) ask why in 48 hours under law they can't.
Sorry for ranting but ....well, you all know.