How people with ME can change the world.
Greg Crowhurst Aug 28 2010
(Permission to repost)
"As of 1st November 2010, blood donors who report that they have had
ME/CFS will be permanently excluded from giving blood in the UK. This
change is being made on the grounds of donor safety, as ME/CFS is a
relapsing condition. It brings practice for ME/CFS into line with other
relapsing conditions or neurological conditions of unknown origin"
..the statement above, today on CoCure, from the Department of Health, to the MEA is a major victory; many thanks to Charles Shepherd .
The DOH's previous position, just over a month ago, was that "in the absence of any infectious cause of CFS", people with ME were prohibited from donating blood "while they felt unwell". However Shepherd stressed that "whilst it is true that the role for persisting infection in ME/CFS remains uncertain there is very sound evidence, as is referred to in Sir Liam Donaldson's report into ME/CFS, to show that a variety of infections, predominantly viral, can precipitate this illness. There is also evidence of reactivation of latent viral infection (eg EBV and HHV-6) in some of these patients." So presumably that is now accepted.
It's another step along the way.
As is Harvey Alter's MRV study, although it has gone largely unreported here in the UK. As Jean Harrison points out today on CoCure : " Apparently articles on scientific advances are vetted by the Science Media Centre, Science Advisory Panel " And who sits on that panel ? Professor Simon Wessely, whose influence over Government policy just goes on and on : " despite having been shown to be so wrong about, for example, the Camelford disaster, Gulf War syndrome, the dangers of mobile phones, the nature of IBS, the nature of fibromyalgia and the nature of ME/CFS ". ( Wessely's Way: Rhetoric or reason? Margaret Williams and Malcolm Hooper http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm )
Wessely takes a dim view of viruses and ME : " What lies behind all this talk of viruses and immunity ?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... Viruses are an attribution free from blame ... there's no blame, no shame and no stigma ... and here is the virus research doctor himself to protect us from that shame... And what is it he delivers? Respect!"
"Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. .... Do any of these symptoms possess diagnostic significance? The answer is basically negative... The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. 'the average doctor will see they are neurotic and he will often be disgusted with them.' "( Wessely's Way)
Following publication of Alter's study Craig Maupin has so movingly written on CoCure today : "It is an remarkable time in the history of this devastating illness. Hopefully, recent findings will hold, and it will be a time to celebrate freedom -- with thankful hearts. " How I wish I could agree with him. How I wish I could hold up some glimmer of hope for my wife, in so much pain and suffering.
There was so much hype around Alter's study . I wrote in the BJN last month :
"The XMRV discovery, hailed by patients as the ‘game-changing scientific event we have been waiting for’ (CIFDS Association of America, 2009), is seen as a wake-up call to the medical establishment, which has neglected biomedical research and input into ME/CFS (Whittemore Peterson Institute, 2009)"
But I have to say I have not been dancing in the street. We thought the long-awaited publishing of the article would change the world, instead the PNAS paper feels like a profoundly depressing inconclusive, massive non-event, from where I sit, dazed by the seemingly unstoppable power of the psychiatric lobby (I have a lot of dealings with skeptical medical professionals recently) and befuddled by all this new talk about changing the name of XMRV to HGRV and for those who are positive, calling the disease (ME?) HGRAD : "haggered"??
Some criticize the name but hey, here on the front-line "Rad" means "radical"!
Now there's a pointer ; here lies the way ahead !!
As Martin Walker pointed out so well back in 2005 : (http://www.blogger.com/www.theoneclickgroup.co.uk/documents/.../Realpolitik%20and%20ME.doc" )
"The psychiatric lobby is now marked by its financial power –... its roots in major medical research institutions like the MRC and increasingly its links to corporate lobby groups funded especially by the pharmaceutical companies.
The patient, or ‘sufferer’ group which has been forged simply by its opposition to the psychiatric lobby, has inevitably consisted of disparate groups and individuals. Inevitably, because unlike the psychiatric lobby, this grouping has no common ideological purpose nor does it have a hegemonous leadership. Mainly, as well, this group is composed of people who are ill or their carers, circumstances which leave little room for organised campaigning. The only two defining criteria of this group are, first, they seek effective treatments for ME and second, they have pressed the research community to carry out physical research in order to find the organic causes of ME."
(Realpolitik and ME, Martin Walker 2005)
Exactly ! Until we as an ME and Carer community get our act together : and how can we, given the particularly cruel nature of ME, the psychiatric lobby will not be ruffled in the slightest by the PNAS paper or - as we have seen- the Science paper or any other paper or name change : they have the power and resources to easily shrug all that stuff off .
"Radical "though, comes from the Latin "radicalis" which means "root". Here is where the change will come, I believe. Grassroots action , if every single person with ME was to say "No More!" and take action ,if possible, in whatever small way they can, to change things locally , the authorities would crumble , deluged by tens of thousands of demands for biomedical services. My wife and I have shown how powerful this can be.
Years of campaigning, of pursuing a formal complaint process, of I and others putting ourselves on the line time and time again,of taking all kinds of risks, have led to our local health authority agreeing, after a huge struggle, that people with ME require a biomedical service and that GET is not appropriate.
We may not be able to organize, to get together at all, to march in the streets : but we still have a very important job to do. Change is not going to come just through the WPI or any number of articles alone, it is will only come to the extent that you and I realize that our job is to make it impossible for people with ME to be dismissed.