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WPI Letter to Dr McClure ****

Countrygirl

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paddygirl;68386]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
There is no Statute of Limitations on crimes commotted against children, and you were obviously young at the time.
I agree. When this illness is validated we must not allow the medical and allied professions to ever commit such crimes against sick children or adults again. When the time comes, and hopefully it will be soon, we must take action as a group and ensure that the main perpetrators are called to book.

Villagelife, your story shocks me, although it is far from being unusual.

Children in the UK have been locked in psych wards, with their parents only allowed restricted access, and refused food. They are told that they will only eat if they prepare the meal themselves. Some of them are too ill to do that, so they are deprived of nourishment. One day, when the time is right, we must ensure that the disgraceful story of medical negligence and abuse in the UK is told. Perhaps that time is now close at hand.
 

oerganix

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And what the heck does this mean??:


I assume that means both Kerr and van Kuppevald actually asked the WPI to test samples from their own ('negative') cohorts, which were then found to be positive by the WPI... which raises the question:

Why would these researchers have made such a request and subsequently made absolutely ZERO mention of it??

And I still don't see why the WPI didn't yell the moment those researchers failed to mention these facts, unless as Polly pointed out there were some legal technicalities involved. I have a hard time understanding that, though; normally such research collaborations are not secrets tied up in legal red tape or anything.
I can't parse just what their motivation is/was, but it sure gave certain people, like Dr Vernon, a chance to show their true colors, didn't it?

It gave some people just enough rope to hang themselves.
 

oerganix

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This really gets me into conspiracy theory mode. I need you guys to talk me down.

It's starting to look like Kuppeveld and Kerr were somehow pressured to get (or at least report) negative results. Or could they have each on their own have decided to do this.

If they were both under pressure, it would have been an international effort by some group. And the pressure would presumably have been pretty intense, especially in Kerr's case, given that he was, in a previous life, a friend of ours.

This kind of looks bigger than an insurance company trying to save money. I know these insurance guys are big, and they get nasty, but this just seems a little too...I don't know....nuts.

Talk me down off the roof guys. I'm full blown JFK at the moment.
I don't have a problem saying "conspiracy".

For me, the conspiracy has been obvious from the earliest time I became aware of the whole psychobabble school. I never thought they were just stubborn, ego-driven scientists who simply have a different point of view or conclusion. They have engaged in spurious "research" and spurious conclusions from the beginning. Only lately have they been begrudingly ackowledging the physical facts of ME/CFIDS, and then saying, over and over, "but it doesn't matter because all these physical symptoms have been caused by your false illness beliefs". It would just be incredibly hard to convince anyone that a retrovirus in ME patients is a figment of the imagination or that wrong beliefs put it there.

The mad dash to try to counter WPIs findings are all out of proportion to the study published in Science, if it is only science you are interested in. The whole disinformation effort from SW et al showed desperation, IMO. And desparate people do desparate things. Like try to get a reputable scientist to come up with the results you want by providing them with the cohort and samples you think will make it impossible to find anything you don't want them to find.

I see McClure now as possibly setting the stage to reveal that she was manipulated by Wessely. It is the only way she can reclaim her reputation. I personally sent her an email telling her that the WPI cohort was not as she stated and I provided links so she could see for herself. Annette Whittemore's letter says that she also informed McClure of this. I responded to the BMJ editorial by McClure and mentioned this lie. Yet McClure restated this lie several times after that. I can imagine SW insisting that she do this and her acquiesing despite her better judgement. We know that SW has power in UK in inverse proportion to his ethics and his compassion for sufferers of ME, and as revealed elsewhere on this forum, those who suffered from toxie gas exposure in WWI, shell shock in WWII and Gulf War Syndrome more recently. It might take a scandal like this for a scientist in UK to be able to get out from under his control or influence.

As another poster pointed out, UNUM has been paying the Wessely gang for decades. And UNUM has been engaged in fraud and malfeasance for decades, regarding disability, both the US and UK. They are at this moment, advising the UK board of Welfare on how to deny claims. UNUM has been sued many times and lost. It is true they give out a "Vulture Award" to the employee with the most denials. They were called a "rogue company" by the media in UK when some of their doings were brought to light.

I would really like someone to investigate whether any insurance company and/or drug company money has found its way into the pockets of Reeves and/or any members of his family. The coordination of the disinformation campaigns in UK and US are too similar, and they like to quote each other too much, to be simply coincidence.

I don't think Kerr, and probably not McClure either, are involved in the conspiracy. I think they have been used, hoodwinked and to put in more colloquially....screwed...by the same conspirers.

Trying to get others to do their dirty work just might be the downfall of SW and his buddies.
 

bullybeef

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And I have just had a thought. What happens if there are two people under the same ME specialist, one is XMRV+, and the other negative. Does that specialists professional opinion become called into question? We understand there is no diagnostic test used for ME here in the UK, but it matters in regards to benefit claims that you have a recognised disability. Will it become a case that people who are suspected of having ME, will have to take the XMRV test first?

And even though we have a 'free' health service, we are not privy to every note written in our medical records, and in some cases, we cannot even read them!! So, there is much risk in handing out a diagnosis that now could be proven by a blood test. I wonder how many people in the UK have been diagnosed with ME since October. I can imagine, not that many.

If I become aware of someone else under the same care of my consultant, yet they are proven XMRV+, and I am negative, do I say something? And would that consultant become the patsy? I think they will.
 

ukxmrv

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BullyBeef,

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.

What do others think?
 

MEKoan

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Having briefly been part of the MS community, when misdiagnosed, I can tell you that people with MS all over the world who are disabled by fatigue and cognitive problems, rather than loss of use of a limb or a sense, often have a very difficult time making a case for disability.

Having a more clear cut diagnosis is just the first step. Disability issues and treatment options are likely to remain hurdles for us as they are for people with other chronic illnesses.
 

Otis

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Having briefly been part of the MS community, when misdiagnosed, I can tell you that people with MS all over the world who are disabled by fatigue and cognitive problems, rather than loss of use of a limb or a sense, often have a very difficult time making a case for disability.

Having a more clear cut diagnosis is just the first step. Disability issues and treatment options are likely to remain hurdles for us as they are for people with other chronic illnesses.
Well said Koan. Invisible illnesses, I fear, will continue to be an impediment to equitable disability payment here in the US as well. Sadly investments in causation, prevention and treatment would return 100 (at least!) fold but we live in a very short-sited would. A business-like cost-benefit analysis isn't in the cards.

Otis
 

MEKoan

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Hey Otis,

I suppose there is a very real possibility that we may move swiftly from orphan ailment to treatable illness. Crazier things have happened. For instance, who would have thought we'd still be looking for "the virus" in the second decade of the 21st century when so many of us began this journey by saying: What kind of crazy virus did I just come down with?

Nothing about this has been predictable. We may be in for some real luck.

Could happen.

:innocent1:
 

CJB

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The letter really does show that we, on this forum, analysed and dissected the failed studies totally accurately, and came to exactly the correct conclusions, even though we didn't possess all of the information... it shows that we were right all along, and that, collectively, we are a powerful force, and seem to know more about the issues than the so called scientific experts.

Although this doesn't exactly make me happy... I think it would be a great time for us all to take a moment to give ourselves a group pat on the back for sticking through all of this, and having the courage and strength to stick up for each other and the truth.

Some people especially have put a lot of work into contacting the WPI, Imperial College and the media etc, to try and get the whole truth out there, and we have all contributed to a powerful force for good together on this forum. Collectively we have done an immense amount of work. I'm proud to be part of such a top quality forum amongst people who really care for each other. Great work everyone.
Very well said.

The supreme confidence Dr. Judy has always exuded told me intuitively she had the goods. No idea she had this kind of goods. I'm struck by how much control she exerted over her public comments about their "studies" in light of this information. They were given plenty of time to come forward with the truth.

I'm also struck again by how good the original paper/study was and how much integrity was shown.

Wow.

ETA: Way to go, Gerwyn!
 
B

bluebell

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The biggest question raised by this letter seems to be...who is going to play these "characters" in the movie. I am thinking Hollywood will be all over this in a matter of months.
 

starryeyes

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Originally Posted by _Kim_
Any coincidence that Annette went live with her April surprise the same day McClure's radio interview was posted? Smackdown.
I think you're right Kim. Good insight!

Is disinformation not just a polite way of saying lies?

From Merriam Webster:
Main Entry: disinformation

false information deliberately and often covertly spread (as by the planting of rumors) in order to influence public opinion or obscure the truth
Oerganix wrote: The coordination of the disinformation campaigns in UK and US are too similar, and they like to quote each other too much, to be simply coincidence.
Oh yeah. That's for sure.
 

HowToEscape?

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Reply to Dr Yes @9:27 4-12

"...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. ..."

Thanks, I was a bit on edge. I don't know what to do other than sit on the sidelines as a <grrr> brain-addled spectator... but I truly hope that the net result is more not less interest in the subject - the subject of curing this d-mn thing, not merely isolating 1 or n virii - rather than skunking the party.
I'm not a great believer in scientific conspiracy theories, but there is such a thing as shining the flashlight at an angle suitable to see convenient results - e.g Prozac. Beyond that, people do, especially those encased in a beauracracy, at times work for themselves and against their client/customer/public.

There are a few occassions when a skunk is the appropriate party guest. I wish I knew if this is one of them.
 

HowToEscape?

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And I have just had a thought. What happens if there are two people under the same ME specialist, one is XMRV+, and the other negative. Does that specialists professional opinion become called into question? We understand there is no diagnostic test used for ME here in the UK, but it matters in regards to benefit claims that you have a recognised disability. Will it become a case that people who are suspected of having ME, will have to take the XMRV test first?

And even though we have a 'free' health service, we are not privy to every note written in our medical records, and in some cases, we cannot even read them!! So, there is much risk in handing out a diagnosis that now could be proven by a blood test. I wonder how many people in the UK have been diagnosed with ME since October. I can imagine, not that many.

If I become aware of someone else under the same care of my consultant, yet they are proven XMRV+, and I am negative, do I say something? And would that consultant become the patsy? I think they will.
What that would mean is that the disease(s) we're dealing with on this board is not a simple case of one bug, one disease, remove bug, remove disease. That's a great aid for people with a short attention span, but I don't believe anyone has informed Nature that it must adhere to a bumper-sticker description of how it operates. The human body is not a clockworks.

Another case is if XMRV is a or the sole cause and it can become undetectable but leave the disease in place.
 

Hope123

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The biggest question raised by this letter seems to be...who is going to play these "characters" in the movie. I am thinking Hollywood will be all over this in a matter of months.
Well, if we're taking dibs, I've got mine on the lovely and accomplished Gong Li to play me!

http://www.hollywood.com/celebrity/1114999/Gong_Li

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.
 
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For the film version

CFS: The Movie will surely have flashbacks to the younger Dan Peterson, so I say Matt Damon; he has both the brains and the gravitas. (My hunch is Dr. P. would like that choice.)
 

hvs

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What that would mean is that the disease(s) we're dealing with on this board is not a simple case of one bug, one disease, remove bug, remove disease. That's a great aid for people with a short attention span, but I don't believe anyone has informed Nature that it must adhere to a bumper-sticker description of how it operates. The human body is not a clockworks.

Another case is if XMRV is a or the sole cause and it can become undetectable but leave the disease in place.
Interesting thoughts, hte. It could be that XMRV is to "CFS" as HIV is to AIDS. Nuke the bug, nuke the disease. Or it could be that XMRV goes into and comes out of some kind of latency with infections and other disruptions staying behind. Those of us in the care of Lerner, Klimas, Peterson, etc. have been able to be in good health by attacking the secondary stuff. ...Of course, it could be that XMRV is simply something we lucky ducks pick up while our neighbors don't...