Monday, May 17, 2010

'She went into a hellhole': A mother's candid account of her daughter's battle with ME

Criona Wilson recalls her daughter's losing battle with ME: She went into a hellhole | Mail Online

Aged just 32, Sophia Mirza lost her life to ME – the first time the condition was recorded as an official cause of death in the UK. Here, her mother talks to Louette Harding about Sophia’s excruciating final years and the torment they suffered at the hands of a health profession that didn’t know how to treat her illness

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A disgrace, pure and simple

Wednesday, May 05, 2010

Nick Clegg on ME research

"Dr John"
: CO-CURE@LISTSERV.NODAK.EDUCC: all my M.E. contacts; Phil Parker; Dr Esther Crawley, with permission for all to forward and re-publish wherever they choose.

Dear Esther,

If you are elected as MP for Luton South on Thursday 6 May 2010, I hope that your constituents will think that you serve them well, properly represent them and communicate with them, more democratically than in another, much wider, constituency that you already represent, albeit in an unelected capacity: the M.E. Community.

For background information, I am a Research Psychologist, PhD, who has been unable to work, or live any normal kind of lifestyle, since being diagnosed with M.E. (and I mean Myalgic Encephalomyelitis, not any other kind of variant, CFS, PVFS, CFIDS etc. and I have had all other known illnesses of both physiological and psychiatric origin ruled out) in 1988 - 22 years, at the time of writing.

I have been frustrated, on several occasions, at not being able to respond to comments you have made, in one medium or another, that are at least controversial; in some cases inadvisable or even potentially harmful. I will restrict the examples to just a few, in this letter, to illustrate the broader principle: that I believe your celebrity to be unfair and unhelpful to people with M.E. unless supported by scientific evidence.

On the day after Kay Gilderdale's trial, 26 January 2010, you appeared on several television programmes including ITV, BBC and the Jeremy Vine radio show, BBC Radio 2, on which you optimistically asserted that 80% of M.E. sufferers will make a recovery. At the same time, on Scottish Television, Dr Debbie Wake, told viewers that "very few ever recover, very few return to work." Now, with such polarised views, both cannot possibly be right. So whose version can we believe? Well, to all of the people who have suffered from M.E. for decades and those who care from them, it feels like Dr Wake is nearer the true mark. The truth is that nobody really knows. And why? Because the only official figures we have, from the Department of Health, are an estimate, based upon a similar estimate made by the Centers for Disease Control (CDC) in America; in other words, a guess based upon another guess. But you must have got this figure from somewhere, so will you please give us the reference to the source you are citing, so that we can check its reliability, or will you say that it has no more validity than an opinion, or withdraw it. Doing nothing in response to my request would not be a fair option.

I am pleased to have the opportunity of writing to you today, in your capacity as an Independent political candidate for the seat of Luton South, to ask your opinion of the intentions expressed in this letter (full text below) from Nick Clegg to one of his constituents who has M.E., in which he questions the NICE (National Institute for Health and Clinical Excellence) Guidelines of 2007 and calls for an independent scientific committee to monitor biomedical research:

Dear Mr xxxxxx

Thank you for your correspondence regarding some of the problems that are currently causing concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.

Unfortunately, a ballot to secure an adjournment debate on these issues, scheduled for the week commencing November 19, was unsuccessful.

As I'm sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive proof to fully support any of them. This is why it is vital that more research is done into the causes and progression of this difficult to diagnose condition.

What is not in doubt is the very real physical and psychological damage caused by this disease. The Liberal Democrats have long argued that funding and research must be focused on the `bio-medical' factors involved and not just simply managing the `psychological' issues.

Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an `Activity Management Programme' made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.

To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.

Whilst we welcome the establishing of local centres to focus on ME, we feel the NHS is still too centralised and too unresponsive to the needs of patients and families. We believe the special needs of those suffering conditions like ME can be better addressed by empowering patients and making the NHS more accountable at local level.

Thank you again for taking the time to contact me about this issue.

Yours sincerely
Nick Clegg MP

May I ask, What would your policy, as an Independent MP, be? How would you lobby your own MP to represent you?

I have wanted to reply to some controversial points that you - and sometimes, your daughter Emily (Wilcox) - have made in articles, especially in the Daily Mail, for example about Emily's recovery after treatment by Professor Findlay and to check whether you are advocating Cognitive Behaviour Therapy (CBT) and Graded Exercise therapy (GET), both recommended by the NICE guidelines, despite all evidence showing that CBT is ineffective and GET makes a majority of M.E. sufferers worse, some irrecoverably so? For someone with such a high celebrity profile, you are very difficult to reach by e-mail, except perhaps via a showbiz agent, which is not appropriate for this purpose. You defeat every search option I know.

My most serious complaint about lack of a fair right of reply is with respect to the Lightning Process, which you have endorsed on their website for some time and do now in other print and broadcasting media, including the post Kay Gilderdale trial interview. I have tried to get an e-mail address for you from the Daily Mail, Sue Peart, Editor of the Mail on Sunday and from several journalists, who wrote pieces with you and Emily, before finally asking Phil Parker, inventor of the Lightning Process, to forward my e-mails to you and Austin Healey. I am especially annoyed that you have not replied to any of the three e-mails that I sent to Phil Parker, including two about the proposed research with children, under the direction of Dr Esther Crawley and an earlier one, around March 2009, following an article "Jane's Flash Recovery" (in You magazine of the Mail on Sunday, 22 February 2009). I should say that none of the others replied either but all still continue to advocate it and/or make careers from it.

I do not think this is in the spirit of democracy and fair right of reply for which, I presume, you are standing in Luton South and I hope that you will not ignore this and respond to my personal appeal for a reply now and every time your opinions are questioned by scientific evidence.

I imagine that you are very busy with the hustle and bustle of electioneering right now, so I shall be content to wait a reasonable time for you to attend to a comprehensive answer.

Yours sincerely
Dr John H Greensmith
ME Free For

Monday, May 03, 2010

X Rx

X Rx

Jamie Deckoff-Jones MD
Santa Fe, NM
My daughter and I are culture positive for XMRV. We have started specific antiretroviral treatment. My intention is to share our journey with the medicine and science as it happens