Quite simply, when the dust settles and you have all the proof you need, sue them. UK patients need to get together and go after the people that did these things to them.
I got a small taste of this years ago. I got called in by my daughters school. she was malingering they said, a short lady pushed me into a room by poking her finger in my back. I knew immediatly that all the tales of bullying my daughter told me about were true. I'm slow to burn, very, but I did a
Vesuvius that day.
She turned out to have Glandular fever (think you call it mono?)
There is no Statute of Limitations on crimes commotted against children, and you were obviously young at the time.
I hope people like Simon Wesseley who has helped to have children seized from their parents under the mental health act get well and truly sued. The treatment of Ewan Proctor and others should not be forgotten. This video on YouTube contains an interview with Ewan, the way he was treated was inhumane.
I'm not a working researcher (haven't worked at anything in quite some time thanks to the-disease-that-must-not-be-named), but from what limited background I had before getting sick, I can tell you that this is NOT normal scientific communication at all. First of all you don't make it an open letter unless you are trying to make a point (like, "see everyone? WE are trying to cooperate.."), perhaps hoping to force an uncooperative group into action. And you only make it an open letter and include, while you're at it, damning information about two other studies if your aim is to hint to the rest of the world about what has been going on behind the scenes all along. (Though I still don't understand the delay yet.) Remember that Mikovits stated (in an email, I think?) that there is an effort going on to crush XMRV-CFS research in its infancy; the WPI may already think (or know) that these other groups aren't that interested in collaboration, or the WPI itself may not want to waste time with them (having plenty of better collaborations already). Whatever the case may be, this is a highly unusual, highly political situation (with internet advocacy and media gamesmanship in the mix!) the likes of which I don't think I've seen before in medical research.
We knew there was a lot going on behind the scenes, but I am still floored that reagents and samples were apparently shared - then ignored - and none of the parties disclosed this information (until the WPI did now). So much still doesn't make sense. Surely the Dutch researchers knew that some of their cohort had tested positive for XMRV in the WPI lab, and that it would therefore be politically dangerous to trumpet the defeat of the XMRV hypothesis?
this pattern of accusation and counter accusation was played out between the Americans and the Europeans in the" AIDS WARS" This resulted in a (temporary) suspension of diplomatic relations between the USA and France!
I'm picking the following not so much because of looks but also acting chops!
Toni Collette for Judy Mikovits
Sam Elliott for Dan Peterson
Russell Crowe for Paul Cheney? (Russell with appropriate make-up/ costuming can play so many different part: e.g. The Insider)
Laura Linney for Nancy Klimas
(Who plays David Bell? Simon Wesselly? etc. - I 'd like to fit in George Clooney for more star power somewhere and Philip Seymour Hoffman for acting versatility, Gene Hackman as supporting player somwhere...............)
Meryl Streep can play any of the women and I'd agree she's be fine as Annette Whittemore.
There are very few ME consultants left in the country but we have more who claim to treat and dx CFS.
ME as a specific diagnosis is almost dead but people are still being dx'ed with CFS and ME/CFS. The NICE guidelines also covered diagnosis. The review for the NICE Guidelines starts in August 2010.
The "old style" ME doctors may or may not accept that ME (as per Ramsay) is caused by XMRV. It's going to be individual. Ramsay has now passed away so it will be left to a few older doctors to decide what happens to "ME". I imagine that they will want to see the results of tests on old ME patients and think it through.
If XMRV is established as a cause or a major player in CFS or ME/CFS then all the guidelines will need to be rewritten. This is because these diagnoses are given by exclusion.
This may vary from country to country as some accept XMRV as being the cause and others resist it.
Anything could happen now. We could end up with former CFS and ME people (who are XMRV+) being renamed as suffering from XAND (or whatever). The "old" ME and CFS people who are XMRV- could go on using those labels.
The benefits people keep telling us that it is not the name of the disability but the amount of disability that is important. Obviously this is untrue. I have experienced disbelief that ME could possibly cause the range of disability that I have.
It's going to take re-education of benefits staff and as the ME Charities discovered when the DWP rewrote the "advice manual for staff" recently, they simply do not agree that ME is as disabling as it is. They are under no obligation to include information we think is important.
I imagine that given the propaganda from Wessely and his friends, that re-educating the DWP about ME and XAND is going to be an uphill battle. Not only do patients need to be diagnosed with the virus but the virus needs to be proven to cause the level of disability seen in patients. DWP staff, routinely ignore post exertional malaise now, they may continue to do this.
Once a NHS test for XMRV exists then doctors will be under no obligation to offer the test to patients in the same way that the current list of NHS tests in the NICE Guidelines are not routinely offered. If the NICE guidelines are rewritten then the test will be become more routine.
Patients will need to be educated. Some won't want to be tested for a retrovirus, if merely having the test, causes insurance problems for them.
There is going to be a big battle out there for a while. Some consultants are going to see XMRV+ and - people and have different ideas on how relevant the test is. The same must have happened over ulcers. There must have been a delay while the new test was accepted and some doctors would have continued to believe that stress was the cause for ulcers. It must have taken a while for all the doctors who laughed at the idea of Helicobacter pylori to accept that it was implicated.
I have been having this discussion on a UK forum too. Could I also ask if any US patients whom are XMRV- whether have asked their specialists about their ME diagnosis? Have you questioned whether you were originally diagnosed correctly, or are your specialists standing by the option that may XMRV not equal ME?
I am in a personally quandary were I dont wish to be positive for the sake of my family. But the consequence is I may have been misdiagnosed for a second time. Which could obviously impact on my benefits.
It is a worry that for some in the UK, they will eventually be proven to be XMRV-, and I think it will be very important to support them too.