The Fight is on...Imperial College XMRV Study

[kim500]

Please go to new article just posted on The Economist website. Comments page, WPI has posted its press release and patients have added excellent comments. Horribly, though, one poster has posted this: "mcji5os1 wrote: Jan 7th 2010 8:20 GMT First, US scientists should try to wash their hands and redo the study. Second, there is a sound way to overcome CFS: The Phil Parker Lightning Process. http://www.lightningprocess.com/"
There's a bit of a mini fight already starting on this comments page to hoard Recommendations (and Most Recommended status). The Lightening Process mob has already made multiple recommendations of their post, putting it at the top. Please go to the comments page and Recommend the posts from WPI and patients. We must drown out the LP fraud and make our presence felt on every forum.
http://www.economist.com/node/15211401/comments
http://www.economist.com/sciencetechnology/displayStory.cfm?story_id=15211401

 

[fresh_eyes]

@ kim500: You can flag that comment as advertising, which it is.

 

[garcia]

Thanks for that Kim. I've just joined (only takes a few seconds) and voted. Others should do the same.

 

[Alice Band]

Holmsey, you asked about the CFS clinic under Imperial College. Yes, another patient is taking it up them to ask why they had to go somewhere else. I'll let you know when I hear

 

[flybro]

Why is the economist so interested in this?

Is it that economically important?

Just how much money is involved?

Who stands to benefit from the failure to replicate the WPI's study, and who stands to gain in the WPIs study being replicated and prooved?

Mr Wessley...

Why is CFS so important to you?

Do you understand that your participation in the study will invalidate the findings for many if not most of the patiernts you claim a desire to help?

This being the case I don't understand if you do genuinley care for the patients, why you continue to involve yourself?

Would it not be more prudent to step aside now, for the benefit of the patients?

 

[fresh_eyes]

Why is the economist so interested in this?
Is it that economically important?

The Economist is more of a general-interest magazine, isn't it?

(BTW, agree with your comments to SW)

 

[flybro]

Cheers Fresh,

I've only read it a few times.

What I remeber is international, political and economical analysis with some future trend pieces.

I'm pretty sure its quite a serious publication, and fairly big player as an 'opinion leader'.

 

[fresh_eyes]

I'm pretty sure its quite a serious publication, and fairly big player as an 'opinion leader'.

Yeah, that's my impression as well. They certainly did a better job with this story than the BBC, who seemed to use nothing but the Imperial College press release as their source. A huge controversy is a good angle from my pov - hopefully that way the story won't get dropped until it's truly solved!

 

[garcia]

When I used to read the economist back in my student days I always used to turn to the science section (probably shows I was studying the wrong subject at uni). It always seemed to have a good science section. Quite a chatty style, and very quirky stories. This story fits in well with what I remember.

 

[spit]

Yeah, they did pretty well, I think, though the description of CFS itself is lacking. Wonder what the word limit for the writer was.

What's funny about it to me is that their article is short and more than a bit snarky and yet manages to sum up the scientific dispute pretty well, as opposed to a lot of the other articles floating around.

 

[kim500]

'a well characterised and valuable cohort of subject'

@ME Agenda aka Suzy... Great work, Suzy! You are a true information Ninja.
View attachment 615

And, as ME Agenda asked, were samples taken exclusively from patients who were examined recently or were they stored samples from patients who had been examined by Wessely in the past (perhaps many years ago)?

I understood the reference in the PLoS article to mean a cohort of stored samples.

The weak link in the PLoS team's research, as we all know, is the patient cohort. The weak link in the article itself is the paragraph 'Patients' describing this cohort. They may claim SW had no part in the study itself, but I'd wager he either wrote the 'Patients' paragraph himself or it was cribbed from other writings of his. The giveaways are the cited references (footnotes 9-18).

A typical habit of weak research papers is to make a bunch of dodgy citations to other published studies that make deceptive or inflated authorial claims look legitimate. It is important to closely scrutinise the cited references.

I'm currently reading the article cited at note 18 in the PLoS paper because it footnotes a sentence that is almost completely vacuous: "We also know from collaborative studies that our patients resemble those seen in other specialist CFS services in the United States and Australia.[18]" Others might like to check footnotes 9-17.

footnote 18 cites:
Wilson AHI, Hadzi-Pavlovic D, Wakefield D, Parker G, et al.
(2001) What is chronic fatigue syndrome? Heterogeneity within an international multicentre study.
Australian and New Zealand Journal of Psychiatry 35: 520–527.

For starters, the full list of authors on this article are: Andrew Wilson, Ian Hickie, Dusan Hadzi-Pavlovic, Denis Wakefield, Gordon Parker, Stephen E. Straus, Janet Dale, David McCluskey, Gwynneth Hinds, Andrew Brickman, Don Goldenberg, Mark Demitrack, Tony Blakely, Simon Wessely, Michael Sharpe, Andrew Lloyd.

I'll try to write up a short analysis of this gem and post it here.

 

[Advocate]

@ MEAgenda: Suzy, I want to say again how much I appreciate your depth of knowledge about...well, everything! Thank you so much for pointing out that Dr Escobar, director of the New Jersey university that is slated to be home to the new NEI Center of Excellence, is a psychiatrist with a Wessely-ite view of CFS. Definitely cause for concern.

Hi Fresh Eyes & Suzy,

I was just about to send a donation for this NEI Center of Excellence when I received a notice from Pat Smith, president of the Lyme Disease Association, located in New Jersey. I THINK this center is what she was referring to when she said that she objected to it because it included Lyme Disease and other tick-borne infections on its list of diseases of unknown etiology.

So for me, this is two strikes against the NEI. Too bad!

 

[Samuel]

I missed what that was a quote of, but I got this from Suzy. I think we should have a who's who to get people up to speed on who the denialists are.

======
DSM-V Task Force member, Javier Escobar, MD, who works closely with the
DSM-V Somatic Distress Disorders Work Group, has alleged that "Functional
Somatic Syndromes" (FSS), or "Medically Unexplained Symptoms" include a
long list of medical conditions:

"Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple
chemical sensitivity, Nonspecific chest pain, Premenstrual disorder,
Non-ulcer dyspepsia, Repetitive strain injury, Tension headache,
Temporomandibular joint disorder, Atypical facial pain, Hyperventilation
syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain,
Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant
effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome,
Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness,
Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast
infection, Total allergy syndrome" [1]

[1] PSYCHIATRY AND MEDICAL ILLNESS
Unexplained Physical Symptoms What's a Psychiatrist to Do?
Humberto Marin, MD and Javier I. Escobar, MD
01 August 2008, Psychiatric Times. Vol. 25 No. 9

Special Report
http://www.psychiatrictimes.com/display/article/10168/1171223
======

 

[fresh_eyes]

Thanks, Samuel. Perhaps Escobar and the NEI deserve their own thread?

ETA @ Levi: Sigh. Have to say I'm kinda disappointed with Dr Racaniello's response on this.

 

[Samuel]

I'm pretty sure its quite a serious publication, and fairly big player as an 'opinion leader'.

Yes it is.

Advocates should send the science editor cogent, /polite/ email with references to scientific publications and quotes.

Turning him into an ally is important.

 

[Samuel]

Thanks, Samuel. Perhaps Escobar and the NEI deserve their own thread?

Yes! The only reason that I did not create a new thread was that my post was a reply. In retrospect, I'd have done that.

Also, the present thread is too large and perhaps we can split out targeted advocacy tasks to new threads.

The idea is: people will see the targeted advocacy thread, quickly find the email address / website / snail mail address / phone number / whatever, know what to do, know why to do it, and do it.

Perhaps we can have a special keyword in the title for such threads. Like "ACT". Or perhaps not.

 

[Stuart]

NJ NEI an empty basket?

Stuart, I am not a US resident nor a member of the Lyme community but I was sent this Lyme advocacy related material a week or so ago since it relates to a proposed NEI Center of Excellence in New Jersey, which has some relevance to work that I have been doing.

If I were a resident of the US I would have significant misgivings about the siting of a proposed "NEI Center of Excellence" within the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS).

Wow Suzy, I second the research ninja nomination!

Can you tell what work you are doing that has relevance the Lyme Disease Association email you received?

I dont want to get into Lyme wars, but I do think there are differences amongst that community, I have no way to qualify their views, but I have seen the film Under Our Skin and have heard from some Lyme patients on this board who feel that all is not known about the disease. Many doctors say chronic Lyme does not exist, it is treated with drugs and goes away the same is said of chronic EBV, they have had many of the same acceptance issues from the medical community.

The only thing that catches my eye that I take issue with is Pat Smith calling CFS, FM, GWS, and MCS Autoimmune Diseases. These illnesses are not all autoimmune - I suppose someone who gets whiplash in an auto accident and develops FM somehow triggered an autoimmunity??? There are coinfections in both Lyme and CFS, some of these infections in Lyme patients appear to cause very similar neuroendocrine immune symptoms seen in CFS patients. Ticks are a known vector, but there is question if other insects could be a vector as well (spiders, etc.). Sorry, did go off on a Lyme tangent!:tongue:

I am much more worried by your own submission that the NJ NEI Center may be organized under The Robert Wood Johnson Medical School (RWJMS) - Medically Unexplained Physical Symptoms (MUPS) Center - run by Dr Javier Escobar, MD. Scary! :scared: Where is do you find this information, can you cite your source? I found nothing in the New Jersey Assembly Resolution 202 that states that.

Dr. Bell in his November 6, 2009 Lyndonville News states his support:

Lyndonville Research Group Report

The LRG is back in business. A couple of phone calls, a pizza, and we are off again. I think that is the definition of a grass roots organization. We have four projects listed and have begun working on them.

Project #1 is the lecture in Batavia on December 6 at 2 p.m. I anticipate the talk will be about 1 hr to 1 hours, then a break, then questions until 5 p.m. The rental of the conference room is reasonable, and it holds 400 people. I think now is the time for communities to get active again, and I will be happy to present this talk to any community, providing a local group or individual pays airfare and lodging. It might be a good way to get support groups active again.

Project #2 is to begin organizing support for the New Jersey NEI center and their satellite branch in western New York. If I did not have to run the business, I would be happy to see patients with CFS in western New York.
​

PANDORA is also supporting the NJ NEI initiative and his it as their Facebook cause. http://apps.facebook.com/causes/194098/40533665?m=6d54c0aa


The New Jersey Chronic Fatigue Syndrome Association seemed to report it as a good thing: http://www.njcfsa.org/

New Jersey Assembly Resolution 202 urges Governor and memorializes Congress to encourage establishment of research center in New Jersey dedicated to chronic neuroendocrine immune disorders.
Click here for a copy.
​

Anyone with the NJCFSA here to comment? Dr. Kenneth Friedman is a researcher in the physiology of CFS and a trustee of NJCFSA.

I was hopeful about activities in New Jersey (you know those CFS activists Pat Smith takes issue with), they are a region with very active groups with apparent results:

The Governor making this proclamation:

Governor Corzine Proclaims May 2009 as
Chronic Fatigue Syndrome Awareness Month​

Dear Advocates:
May is International CFS/ME/FMS Awareness Month. If you would like to raise awareness for these illnesses, please print out the NJ State Proclamation, along with the press release, and post them or mail them to any of the following: Government Health Agencies, Media Outlets, Medical, Scientific and Legal professionals, Health- related organizations, family and friends.
Thank you for your participation in raising awareness for CFS/ME!
Eileen Holderman
NJCFSA PR Chair
​

NJCFSA it seems holds a major annual conference and a benefit gala as well as:

Giving out scholarships:

Congratulations to the 2009 College Scholarship winner Alexandra Volper
The NJCFSA College Scholarship Committee is proud to announce that Alexandra Volper from Point Pleasant, N.J., is our 2009 scholarship winner.
Alexandra attends Point Pleasant Borough High School and is going to attend Ocean County College, Toms River, N.J. in the Fall.
Read Alexandra's winning essay and previous winning essays on the Essays Page.
​

I was hopeful we had another basket, do we? I cant confirm your assertion.

 

[The Phantom]

ETA @ Levi: Sigh. Have to say I'm kinda disappointed with Dr Racaniello's response on this.

I don't think Dr. Racaniello understands that there are multiple definitions of CFS, so "well-characterized" doesn't really mean anything. There's already a brief comment about this problem on his blog, but I'm afraid it doesn't explain it in a way that he will understand. I'm too tired now, but maybe tomorrow I'll be able to post something there that will explain why it's not clear that this study includes any patients that would meet the Canadian Consensus definition. Or somebody else will. Ditto for The Economist.

 

[_Kim_]

Stuart, you're making me proud. When it's all spelled out like that, it's no wonder that I've not run up against some of the challenges other patients have.

I'm so used to defending NJ to all of the put-downs, but by golly, this isn't such a bad state to live in if you have CFS.

 

[usedtobeperkytina]

I wondered if the freezing of the samples made a difference. But from what I understand, the WPI samples were frozen also.

But I remember DeFreitas said freezing messes up trying to find the virus she found. That was a major problem with the CDC trying to replicate her findings, they didn't use fresh samples. Something about freezing corrupts the DNA into fragments. Multiple freezings corrupts it even more.

I remember she also said that the virus can only be found within six days, that is the one she found. She said it would be there and then suddenly disappear.

I think that the paradigms of how these viruses act can not be followed, especially on a newly discovered virus. It seems XMRV has the unique characteristic of actively replicating and then going dormant.

They used to think that EBV didn't cause any cancers, now they know it can.

So any test that says, "We did it differently but our way is just as good," is not reliable in my opinion.

I just have a hard time believing that NCI, WPI and CC were all wrong.

Looking forward to more. I am excited. I just know we are going to here some exciting news soon. On pins and needles here.

And sorry for the intrusion, but Roll Tide. Congrats to University of Alabama.

Tina