The Patient Advocate on WPI-Peterson Institute opening

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Now remind me again which UK doctor tried to manipulate everyone into thinking the WPI didn't exist. Who said, very stupidly, that the picture was a drawing? No, don't bother, I know exactly who she was. What a fool.
 
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Yea, I heard about it on here. Won't say who, but she is well known in the UK fatigue world. What a muppet.
 

urbantravels

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There was a computer illustration (the professional term of art is a "rendering") of the building that was being widely used on the WPI web site and other publicity materials while the building was under construction. That's what you do when you don't have a completed building yet, pictures of construction sites are not that aesthetically pleasing.

Did somebody use that as evidence that the WPI "doesn't exist"? That's pretty dopey. I'm glad to see pictures of the completed building finally.

signed, used to have a career in architecture before becoming a full-time sick person
 

eric_s

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Yea, I heard about it on here. Won't say who, but she is well known in the UK fatigue world. What a muppet.
I have another idea, after reading this.

Someone could establish a website where they list that kind of statement or actions by doctors, scientists etc. and then point it out as wrong.
Like for example "no XMRV in the UK" and then if the WPI releases it's hopefully positive UK study link to that.
Like the websites where they debunk myths.

It could be called "Weasel Watch" :D but probably a more serious name would be better.
 
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Here is the page from Facebook:

http://www.facebook.com/topic.php?uid=154801179671&topic=12698
Emily I have to post here today because I have just witnessed the most blatant attempts to discredit WPI and their XMRV research work. In fact, the whole existence of the WPI was questioned.

I went to see a British doctor who is actively involved in areas of CFS research in the UK talk about "The Future of CFS/ME Research".

She spent 15 MINUTES on the subject of the WPI in which she said:

1. XMRV figures were exaggerated. To demonstrate this she showed original report with 67% XMRV positive statistic. Then she showed the statement where 95% was quoted and said WPI had made it up. (I did correct this later on, explaining that more samples had been tested).

2. The WPI "doesn't exist" in that the picture of the building is fake. The WPI are asking people to donate money for something that doesn't exist. (I felt it was also implied that the WPI were being deceptive around this issue.)

3. That the WPI had a vested interest in publicising their study in a big way because they then went on to charge over $600 for tests for XMRV. (no mention of Wessely and his famous XMRV test!)

4. That anti retroviral drugs should be used (she smirked after saying this, as it to say "what a ridiculous idea") - she implied that the WPI had said that they should be used now to treat everyone with ME.

5. Claimed that the 2nd UK study and Netherlands study used the correct methods.

6. Claimed that the UK centres were "ideal to use for research" because it meant researchers had such brilliant access to patients.

7. That the WPI's cohort was flawed (no really!!) because they were all part of the Lake Tahoe outbreak group so "probably all had an illness caused by a virus" (er don't we mostly all have this?)

8. That XMRV was interesting but prob wasn't relevant to the UK (didn't get the chance to inform her that WPI are testing some UK people's blood for free - I had my hand up but I'd clearly already annoyed her too much)

I also feel it was implied that the WPI study was rushed. That they should have waited before making such an exaggerated claim.

Please bear in mind - this is all my take on the talk. Maybe I have it all wrong.

Oh and I should also mention that when I asked the chairman of the ME group who were holding the meeting if he could advertise the Invest in ME conference (where WPI are presenting), he refused and would not give me a reason why. Considering the talk I attended was called "The Future of Research for CFS/ME", I could not see why advertising a conference on the same topic would be a problem.

It's a rather blatant case of censorship. By not informing people about Invest in ME, patients don't have access to new research news. Not everyone has the web, not everyone knows all the information. If the ME support groups don't provide, what hope do we have. How can these people know what is going on?

The saddest thing is, everyone seemed to love the talk. They believed her when she said the MRC are wonderful and that lots of research is soon going to be done. They believed that XMRV wasn't relevant to them.

The weird thing is I got the impression she was a good doctor who really really cares about her patients. I felt her comments about the WPI were unprofessional and unecessary and thought the WPI should know about how their work is being discredited. I assume she will go on to do that talk elsewhere and spread her views further. And she does talk a lot of sense (on other issues) so why wouldn't they believe her.

I dispair of this country. Today made me so sad. I have never felt stress like it! Will the WPI see this message or should I email them too?
about 5 months ago

Sorry - just read point 4. which doesn't make a lot of sense. What I meant was she implied that WPI were suggesting that anti retroviral drugs should be used right now to treat ME, rather than what they actually said which (I think!) is that the drugs were a possibility for future treatment.
 

urbantravels

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Wow. Just wow. One hardly knows where to begin.

The "fake building" part is laughable enough. Yes, that was a rendering of a future building. Perhaps when everyone goes to enjoy the grand opening that can be written off as a mass hallucination? A $77 million building seems pretty real from where I sit, but no doubt I am vicariously participating in the hallucination.

The rest of it - sheesh.
 

Sunshine

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Now remind me again which UK doctor tried to manipulate everyone into thinking the WPI didn't exist. Who said, very stupidly, that the picture was a drawing? No, don't bother, I know exactly who she was. What a fool.
Dr Esther Crawley. She described the WPI as a 'Cartoon' and not real.

Dr Crawley is Medical advisor to AYME, where children go for advise and support.
The same woman employed by the NHS who says CBT/GE cures 70% of people with CFS/ME.

Dr Crawley was given 0.73 million for 'ground breaking research' using CBT in CFS/ME by the National Institute for Health research body.
http://www.nihr.ac.uk/Pages/default.aspx

“Throughout my clinical career I have aimed to base my practice on robust research evidence. This award provides an ideal opportunity for me to achieve my long-term goal is to transform the care of children with CFS/ME.”
Dr Crawley is involved in 3-day-cure for CFS/ME pilot trial using 'Lightning Process (LP)'.......... in children.
(Cure is reached by saying 'No No No' when you have CFS/ME symptoms, and is yours from you local pyramid seller scammer for approximately 1,000+).

Dr Crawley on CFS/ME talking on BBC 4 National Radio

''I've not had a single child or family say that they didn't want CBT, it's a mutual decision and they benefit a lot from it.''
''10% of adults actually with chronic fatigue syndrome are too sick to leave the house. ''

''So I do go round the country and see children that have been in bed for seven or eight years and don't have a doctor looking after them which I think is still astonishing. On the other hand there is a really interesting illness among athletes called overuse under performance syndrome which sounds exactly like chronic fatigue syndrome. So they get a virus, they reduce their exercise, they try and catch up on their exercise programme, get sick again and the cycle continues''

''Yeah there's lots of names for chronic fatigue syndrome and the patient group usually call it ME or myalgic encephalitis or myalgic encephalopathy and that is because that actually described their symptoms, so muscle aches and pains and cognitive or thinking problems. In fact doctors don't like that because when you actually look there's no evidence of muscle inflammation.''


''The two forms of treatment that have been shown to work are cognitive behavioural therapy and graded exercise. Now what NICE says and what we do in this service is we provide individualised rehabilitation programmes for children that use a sort of pick and mix system that works for the child. And the two areas that we concentrate on mostly is sleep and activity management.''
 

Sunshine

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WPI opening is the first real chance we've ever had to breathe a sigh of relief.

Now we just need 10 in each country.

The Whittemore's went to Capitol Hill a while back to lobby for more funding but were turned down, presumably until the XMRV replication studies are sorted out.

I think America needs more than 1 WPI, simply not big enough to see the amount of people who will want an appointment.

Meanwhile in the UK don't have a WPI, but we so have NHS PACE & FINE trials due to be completed by 2012.

The aim is to cure CFS/ME over the phone, via nurse encouragement and the use of an activity diary and exercise.