The Fight is on...Imperial College XMRV Study

[starryeyes]

Esther, I'm not sure you saw this as I was Editing when you wrote the post above:

Can I respectfully ask that you and others provide a warning about the use of foul language and extreme abuse towards our best researchers if you post her Blog here again?

I'm still deeply disturbed and upset by her most recent Blog that someone else here encouraged me to read all the way through. I knew better too and now I'm full of regret and frankly, anger.

I realize this was probably done in innocence of how it would greatly offend others so I just ask for future warnings on these kinds of postings.

 

[Advocate]

Hey ParvoFighter,

I'm not going to look them up, or quote from them, but you wrote a couple of posts a few hours ago that really cheered me up. Keep up the good work.

 

[Gert]

Don't Count On That Sorry

and that the study will stand or fall based on the science and not the personalities involved. People believe that the world is round because it is, in fact, round, not because the PR for the round lobby was better.

Heres A video of Robert Kenedy Junior speaking about what happened to the Verstratin studyabout links between Autism and Thimersol. He details how the original study was convienietly lost because the data was so clear that vacinations were strongly coralated with autism.
He recieved a transcrpit of a secret meeting of the CDC etc where most of the talk was about how to cover up the results of the study. New studies were done which Kennedy describes as low quality fraud. Hes a lawyer so should know what fraud is.

Pt 1 - [video=youtube;lCBCcSNvtdc]http://www.youtube.com/watch?v=lCBCcSNvtdc[/video]

Pt 2 - [video=youtube;pIvTP3V05rg]http://www.youtube.com/watch?v=pIvTP3V05rg[/video]

 

[Holmsey]

Mikovits went too far I believe when she said they tried not to find the virus and suggested the insurance companies were behind it all. I don't think researchers generally say those kinds of things!

That said I think she saw the quick publication and Wesselys Insurances ties and starting thinking.... the first study comes out very quickly and slams XMRV - and wonders if thats going to dampen interest in the field. Money drives research; if you can;t get it you're finished. In that same vein I think its possible that she's really damaging herself with NIH grant review committee's with these statements.


I have to say I met her twice and she is a talker. You ask her a question and she goes on and on and on. She's very interesting but she just keeps going - from connection to connection to connection. I wonder if thats partially whats going on here. She's talking alot and the media is gloaming onto the sensational stuff.

Need you to clarify here Cort, what Insurance links?

 

[Mithriel]

A few years ago, the Gibson report, drawn up by a group of MPs after a lengthy inquiry, called for the fact that SW and co were involved with the insurance companies and the DWP who stood to gain by making CFS a mental health issue to be investigated. This was not done.

Go to the MEAction site and you will find all the information you need. Please don't demand it to be all posted here, there are pages and pages of it.

Mithriel

 

[flex]

I agree with you on this, flex. Looking into the whole DSM-V thing, I got a glimpse of an Orwellian future where everyone is on mandatory psych meds. It's bigger than just CFS.

That said, I also agree with those who think it wise to tone down the rhetoric on here. Unfortunately, the burden is on us to impress the public with our utter sanity and stability. It's unfair, but that's how it is.

You are right fresh_eyes we need to maintain our dignity. However take a look at the Robert Kenendy Junior video a few posts above. Facts, concise, political outing, well studied, intelligent, truth. The video is all about CDC and corporate collusion and corruption. This is the kind of democracy we live in, the government can be corrupt but we have the right to speak out about it as the journalists walk by on the other side of the street, either to lazy or afarid to speak out. Then the government just ignore the truth!

If the public is looking in on this debate and indeed this forum, GOOD!! Maybe it will give them a big wake up call.

Always remain dignified, calm and truthful in your argument.

 

[Mithriel]

I also believe that the best way to beat the psych lobby is to be more reasonable than they are until the science proves them wrong. The science itself will be enough vindication for me.

I have followed the research for decades and we thought that this was true. The science would be done and things would get better.

Well, the science WAS done, the physical abnormalities piled up but what happened? Findings were either ignored or dismissed with interesting but a very small study which needs replicated.

They stopped replication studies by making sure money was not made available and prevented studies from being published.

They are also good at saying findings have no clinical significance which is fine as far as it goes but they push their psychological beliefs by saying that no physical abnormalities exist. People are saying the same thing about the XMRV test, but its relevance is that CFS bodies must be different if they are more likely to have it than a normal person.

Their theories say that anything which damages the body is disease whereas illness is a behaviour. CFS is dismissed as an illness behaviour, hence "unwellness" but having XMRV makes it a disease by their own definitions

They are now desperately trying to prove that PHYSICAL signs can be caused by illness behaviour. As others have said they are rolling this out for things previously thought of as physical like MS. They have quietly used CFS to make a paradigm shift in medicine which will impact everyone.

Behaviours are a choice so the sick are like that because they refuse to admit their problems, change and become well. Giving them sympathy, care and money for basics just keeps them sick so removing all these is an act of kindness.

Politicians love this and the public support it because they know that they are not weak willed so it will never happen to them and their's. XMRV can change this because it is implicated in things like cancer which the public are afraid of so it is different from everything which has come before.

Mithriel

 

[flex]

Vile-ology - hahah! Love it.


If we let anger get the better of us, people watching this debate will feel the same way about us as we do about her.

.

freeprisoner

You are right!

This made me consider the following;

Whats the difference between a passionate person an angry person and someone who is down right furious!!

A passionate person is in search of the truth and presents their argument with clarity and dignity in the desire for justice.

An angry person is someone who runs around the CDC building like a headless chicken with an internal memo that says "Cover up the scientific truth of ME NOW!! Or go home and tell your wife and children that you are jobless, homeless and have no health insurance.

A down right furious person is a psychiatrist holding a test tube of a CFS patient that is electronically linked to a forty foot high neon sign in Time Square flashing "XMRV..XMRV...XMRV"

 

[joyscobby]

no research = no evidence = no entitlement

The DWP is the Government department that administers Disabilty and Sickness benefits in the UK. This is all the Uk even Scotland that has it's own parliment. The main benefits (money paid) relating to ME are DLA (disability living allowance) , IC (incapacity Benefit), ESA ( Employment support Allowance) and CA (carers allowance)

It is a complex system with a long and complex history and theese are not all the benefits that a Person with ME would be in theory entitled (yes entitled we pay for it through taxes)
Entitlement to each benefit has its own way of measuring dissability and sickness. DLA is to meet personal care needs and mobility and CA is dependant on this. there are 3 levels of personal care and 2 mobility. CA to carers of middle and higher. IB is changing to ESA which changes it's emphasis to what you can do - not what is wrong with you and why you cannot work.
So without going into it to much peoples incomes are dependant on how their sickness and disability is defined and measured. The role of Insurance companies is slightly different here. Although some people do have private health care paid for by Insurance such as the US it relates here more to Income Protection and Mortgauge Protection.

The underplaying of ME as a mental health problem, or just muddying the waters, has resulted a down playing of the degree of sickness and disability hence a lower pay out by Goverment and Insurance Companies.

I will give you an example. I am on the Bell Scale at around 20 - 25%. In a recent assessment by one of thier doctors he stated all that was wrong with me is that I needed motivation. A beauracrat in response to my explaining that I was in danger of commiting suicide stated that there was no evidence of this because I had not made an attempt at suicide.
So by their logic to be deemed eligible I would have to kill myself.
This is only the tip of the iceberg. This has and is becoming incresingly worse. The state instead of doing this themselves, now on the premis have of saving money on admin have tendered this out to a private company called ATOS.
I do not know much about ATOS but am sure they are connected to an Isurance Company. Someone else may be able to say more about this.
I am spent as my last dealings with the DWP has left me very raw indeed. I lost a lot of Income despite a deterioration in my health and an increase in my disablity. Go figure.

No research = no evidence = no entitlement

 

[DysautonomiaXMRV]

What a great post Joyscobby, the three last words summing up the situation entirely.

It would be wiser to trust someone who want's to make their daughter well by endlessly searching for a cause.
WPI Institute ethos

Than to trust a psychiatrist who hand picked patients with fatigue who would say the Whittemore's daughter's suffering is due to 'faulty illness beliefs' that are maintained by 'membership of a self help group' and 'secondary gains' from being sick, such as 'time off work', ''benefits' (welfare) etc. And that by searching for a cause they are 'enforcing sick roles' and 'medicalising' the problem.
Imperial College Study - Simon Wessely ethos

Who is more trust worthy when it comes to claims about XMRV?

As for the no evidence - no help situation this is entirely correct.
I have spent many a hospital appointment over the last 19 years or so being told there is no 'evidence' that I need any further testing.

By doing no testing, no proof of organic illness is ever discovered, and so patients with the label CFS or ME, remain hidden and kept away
from hospitals and clinics where they could be offered, at least some basic health care.

Last week I asked for a counseller and I was denied this again. I previously asked in writing to a different doctor and was also refused.
I raised my point that the UK Department of Health claim that ever patient has 'free' counselling for up to 8 sessions. This is not accurate
as (again) it's down to the discretion of doctors themselves. If they believe CFS or ME is 'neurosis with a new banner' which Simon Wessely says it is. Then it is.

The bottom line is this. Who do medical professionals believe? Neurotic patients with no evidence (from no testing) they are sick, or a professor, MD, with awards and titles and decades of star studded research behind them. Hence the BBC, Ceefax (TV test service) and other sources have trashed the stunning XMRV finding by the WPI.

Patients have no evidence, no voice and no platform to defend themselves from the media, doctors, or anyone out to get us. It's a very sad situation.

 

[xanadu]

Need you to clarify here Cort, what Insurance links?

http://forums.aboutmecfs.org/showth...c-view-of-ME-CFS-What-is-it&p=26538#post26538

 

[flybro]

The disease we have leads to premature death. The treatment we currently get speeds it up.

Premature death, wether through heart failure, lymphoma or suicide saves the government money.

EndOff

 

[thefreeprisoner]

Joyscobby and DysX,

I'm so sorry to hear about what you've been through.
I thought I'd been having a hard time (Bell scale 30-40 most days) but Joy you've taken a massive knock there from your already fragile state - tears came to my eyes when I heard about how you've been treated. Let me know if there is anything I can do...

Flex,
My comment was very general, out of an amorphous sense of unease at a lot of different postings from different people - now this thread has got past 1,000 messages it's all blurring into one big lump for me. I have no idea which people posted the things that troubled me, but I felt it was important to say what I did, either as a warning or as a wiggly index finger. :Retro smile:

Ridicule and subversion, backed up by clear facts: those are my preferred tactics :Retro smile:

Rachel xx

 

[Mark]

List the Flaws in the Imperial College Study

Gerwyn's earlier post on another thread seems to have had trouble with formatting but has some excellent analysis so I thought it was worth emphasising this post (with my highlights in bold and red):

the tests used in the imperial college study were adapted from tests used to detect htlv 1 and 2 and HIV-as I understand it the primers used were also specific to these two viruses the effect of these primers and their point of binding on the xmrv rna is not known-Ist variable--

comparing their result to a dna sequence assumed to exist in xmrv is yet another unproven element of their test

I still assert that the tests shown have not yet demonstrated their ability to detect XMRV even if present and need validating against a known sample.

i take your point about validating. Replication, however, does validate the hypothesis that in these conditions XMRV can be detected in these patients diagnosed according to these criteria. What hypothesis was the imperial college study examining? Replication, to be scientifically valid, should aim to test this hypothesis - if not then it is scientifically invalid if not illiterate.

As an aside as a researcher in this field have a look at the controls in the imperial college study the lines are far too faint-they should be off the scale-the test can berely detect in vitro concentrations!

lastly the semi structured questionaire used to diagnose cfs patients in the imperial college study is referenced Sharpe et al 1991-On investigation however this study in no way refers to a semi structured questionaire.Perhaps you can obtain a copy this would blow the study clear out of the water as the methodology at the very least is inaccurately referenced and should have been picked up by the peer review process.

If anyone else favours a new thread specifically to collate and list - concisely - flaws and question marks over the Imperial College Study's methodology and stated conclusions, perhaps they can start one? There will be plenty to go through and find on this thread I'm sure...

Actually, by the by, I keep wanting to go back through this thread from the beginning and pick out the best quotes, best posts, most useful links and summaries...maybe I'll find the time somehow to start doing this, who knows, but I commend it to you as an idea, anyone who's good at/enjoys editing/summarising. That applies to a lot of other threads too. The idea of using the first page of a thread as a continually re-edited "current version" of the thing you're trying to produce - that's spot on! Could you extend this and have a couple of other conventions perhaps? Maybe each person's first post becomes where they submit contributions / edits? Sometimes I feel we need something more wiki-like, somehow, but I also wonder if we could achieve something similar within the existing forum software, just by defining a few conventions like those I've suggested above on how you might use forum threads to collaboratively produce something. I know there are a few projects like that going on - letters etc - but it seems to me that some sort of convention or software to facilitate it (even Google Docs maybe?) might help drive that sort of thing forward more quickly...just a passing thought...

...more urgently, who's on the case of the missing semi structured questionnaire?...

 

[flex]

freeprisoner

You are right to express such sentiments of caution. It is important for people to keep their hats on. I always check myself when someone advises such and idea and read through my previous posts to see if they apply to me, which sometimes they do.

 

[thefreeprisoner]

Mark:

GENIUS!
I don't think your comments need a new thread. My reasoning? They are totally on-topic and in addition, this thread is listed on the first page of Google results for a lot of XMRV-related searches. And people need to know about this stuff. So, away we go with the comments...

I got really excited when I read your comment in red. That they said 'semi-structured questionnaire' really made me think that the translation of this into lay terms would be 'a questionnaire we make up as we go along' but the fact that the questionnaire doesn't appear to exist just confirms that... wheeee, how exciting.

I've pondered elsewhere about the wisdom of attacking the cohort first, testing second, but if this shows that the paper's authors selected their cohort using a process based on a false questionnaire belief, then more power! It would put into question the credibility of the paper in a serious way...

 

[thefreeprisoner]

Aye carumba!

I think I may just have cracked this gnarly nut!
(Forgive me if this has been covered in detail elsewhere and I've missed it.)

I've found the paper on which the 'semi-structured' questionnaire is supposed to be based (Sharpe et al 1991). It certainly doesn't have a questionnaire in it, and I think we can conclude fairly safely that this questionnaire isn't recorded anywhere and is just in some psychiatrists' minds :Retro smile:

Here is the page to which I'm about to refer:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/?page=2

It says there are two conditions which should be differentiated when researching.
One is CFS, for which their definition is severe / disabling fatigue present 50% of the time for 6 months or more, and THAT IS IT, and doesn't rule out anxiety, depression and other psychological disorders which can be present. (This much we already know.)

The other is PIFS (Post-Infectious Fatigue Syndrome), and they say that this must be characterised by a viral infection at onset with medical evidence to back it up.
The paper also says that scientists must state which of these they are studying when they produce a paper.

So... could it be that the WPI is studying mostly PIFS patients but calling them CFS patients because they don't recognise the Sharpe et al 1991 paper, while the Imperial study was done on CFS patients who, according to their own definition, must NOT have a viral onset? This is because, according to this paper, if one were studying PIFS patients, one should declare it in the paper.

This might explain why Imperial and WPI are getting so cross at each other - it's like they are speaking different languages. (Admittedly, one has grammar, structure and meaning, and the other is... agrammatic, amorphous and nonsensical.)

Rachel xx

 

[xanadu]

The case of the missing semi structured questionnaire

...more urgently, who's on the case of the missing semi structured questionnaire?...

The article is Sharpe 1997, not 1991.

They define their position at the outset:"CFS is a relatively new diagnostic label, but the syndrome itself is far from new and was clearly described 100 years ago under the diagnosis of neurasthenia [l]." (self-citation, Wessely S: The history of chronic fatigue syndrome. In Straus S (ed), Chronic Fatigue Syndrome. New York; Mark Dekker, 1994; pp. 41-82)

They advise minimal physical testing, and describe how they take the patient's history, summarised in

Table 2. Elements of the history

• Presenting problems
• List all problems (somatic, psychological and social)
• Clarify nature of symptoms, especially fatigue
• Inquire into changes in life, activity, and sleep, and associated distress
• History of illness
• Onset and course
• Patients understanding
• Coping strategies
• Treatment
• Current situation
• Family
• Employment and financial benefits
• Background
• Family and personal history
• Past medical and psychiatric history
• Personality

At the end of the article, you can find: "A structured interview guide for CFS can be obtained from the authors."

Thirteen years later, that's their best reference for their diagnostic tool. It does not appear to have been peer-reviewed, operationalised, validated or even discussed.

 

[flex]

Edit this letter to suit yourself THIS IS A ROUGH DRAFT
Letter here to challenge DWP Doctors/ insurance companies etc for non payout/benefits or witholding medical treatment/accurate diagnosis


Dear .......

in light of your recent decision which challenged my medical status and cause of symptoms I would just like to point out the following issues.

Your understanding/reporting/ of my illness does not cover the issues of extreme post exertional malaise/........ etc etc

As my doctor/insurance company you are obliged to offer me adequate testing by law/duty of care /contractual obligation. Describing a person as medically unexplained whilst withholding medical testing from them is in breach of your contractual obligations/.......

Statements like "the patient can offer no objective proof of a physical illness" are illogical if you are to withhold the following tests for diseases like (ME) listed as a disorder of the (neuro immune system) under the WHO with the code (..........) under the diseases section of the (.......)

Those tests named above are:

1)Neurological examination videotaped if so required by patient for proof of neurological signs.

2) Tilt table Test

3) Regular MRI on 3t machines to check for CNS damage.

4) Spect scans

5) PET scans

6) Blood testing for chronic immune diseases such as lymes disease etc by a virologist competent in the latest lab technology

7) Referral to a doctor of my choice competent in understanding biological markers of ME as coded above by the WHO

I am entitled to this under the PALS Patient Advisory Liaison Service (UK)

8) Cardio functioning

9) etc etc

You should also accept proof of biological markers that I bring forward from doctors I have dealt with.

As I am sure you are aware there are many diseases and disorders that do not have a specifically single diagnostic test like Parkinson's and Autism.

I am sure you would not disagree that such diseases exist.

The automatic assumption that an individual is suffering form an "emotional illness" whilst withholding such tests as named above is fundamentally flawed. So is the notion that the cause is psychological if a doctor cannot find the cause of a physical illness. The burden of proof of a psychological cause is on the medical profession, I am unaware of one such test that can prove that. I note that there is lower pay out rates/benefits for such "emotional illnesses". This also leaves an individual open to subjective unscientific rhetoric and treatments that could cause further damage to health such as proven in the case of GET and CBT for patients with ME/CFS.


Furthermore the withholding of such tests to prove biological markers is risking that my health deteriorates as a result and I may be obliged to challenge you further on this in the future if such an issue arises due to your neglect. I estimate that I have loss of earnings totaling /$ (....) due to this illness through no fault of my own and your lack of testing could be standing in the way of treatment that could lead to me losing $(..)


Yours Sincerely

CC primary health care trust, MP/Congressman, Etc

 

[xanadu]

Nice work Rachel, that is indeed a paper by Sharpe et al from 1991

Mark, Rachel

Please see my post #1123. Can you check and confirm that I am right in saying the new PlosOne paper doesn't reference Sharpe 1991? They cite Sharpe 1997 (ref 9), which is

Sharpe M, Chalder T, Palmer I, Wessely S (1997) Chronic fatigue syndrome. A practical guide to assessment and management. General Hospital Psychiatry 19: 18599. http://www.ncbi.nlm.nih.gov/sites/e...ractical guide to assessment and management.e

If I'm wrong I will delete both these posts

Cheers