Friday, 9 July 2010

And they call US crazy....

Article in The Independent. On XMRV and the paper that was pulled. Finally the truth is getting some publicity in the UK,you think? Sorry to disappoint you...

This is pure Science Media Centre stuff. Sly dig at ME patients who believe in 'conspiracies'. The ridiculous, discredited and downright fucking dangerous assertion that CBT is

 a psychological approach to treat people with the severest symptoms.

and that

 Physical treatment can include graded excercise therapy, where patients are encourage to gradually do more to combat their feelings of exhaustion.

I repeat here my earlier report on the result given in the Managing My ME study from the ME Association:

Graded Exercise Therapy (GET) tops the list of 'treatments that made me worse' by quite a long way with 56.5% saying GET had made them worse - this breaks down as 33.1% 'much worse', 23.4% 'slightly worse'. A mere 3.4% said they were 'greatly improved' after GET; 18.7% said they were 'improved' and 21.4% reported 'no change'.

But let's not let the facts 'get' in the way of a good SMC brief, eh?

And contains the near-slander from anonymous 'scientists' that the FDA paper was held because it is 'seriously flawed'. Unlike the CDC paper? This is the CDC whose honourable background in their dealing with ME/CFS includes simply embezzling funds given them for CFS and using it for other things 'because they felt it wasn't important'. The CDC whose study had a patient cohort designed to exclude anyone who had the defining symptom of onset after infection, and included so many who have never been diagnosed with ME but said they are often tired?

Not to mention, we are talking here about Dr Alter, the man who discovered Hep C. In what way do these anonymous accusers claim he has suddenly become incapable of decent and thorough science? Well, they don't specify. It's enough to just keep throwing mud until some of it sticks in the public mind.  I hope the 'Independent' feels proud of helping them advance their agenda.

Oh lord, what to write?  I'm too angry to think coherently, so writing at all is probably a bad idea. Where to begin?

Should I start by ranting about, to steal Al Franken's phrase, lies*, and the lying** liars that tell them?

*when I say 'lies' here, I'm looking in particular at the section of the article entitled 'Facts'

**for those who don't know, the Science Media Centre, set up by the last government to put out briefings of scientific and medical matters, has as its 'ME/CFS expert' one Simon Wesseley. He is a 100% pusher of the lie - oh sorry, the liNe - that ME is purely in people's minds, and can be 'cured' by CBT and GET. You should use your own judgment as to how balanced his briefings on the retroviral research and results will be...

Or about the ghastliness of using this picture to illustrate an article on ME and XMRV?

 Is this the approach now? If you can't brush something under the carpet, at least make sure you airbrush the fuck out of it?  Make it look like something from a Bridget Jones film?

All this model needs to complete the insult is a thought bubble that goes something like 'oooh, drank too much again. Great party though. OMG, did I really have sex with Daniel? I should really get up soon and go skiing...'

Or maybe for comparison purposes I could post

this picture of Lynn Gilderdale, whose mother helped her to die when the agony of severe ME became too much to bear.  Or a pic of Sophia Mirza, who had CFS listed as her official cause of death.

This, Mr Connor, is what severe ME actually looks like.  Still think CBT is going to help?  Still think going to a psychiatrist for 'expert opinion' on a retroviral issue was a bright move?

Looking at that picture of Lynn I am gobsmacked by the sheer obscenity of an article using the first pic anywhere near an article on ME.

Perhaps finally I could quote from some of the cogent and articulate responses to the article, and remind you that to the psych school every single one of these intelligent, fact-quoting people are proving they are hysterics simply by posting views that contradict the 'it's all in our heads' school.

If you deny you're a witch, you must be a witch, QED.

 As I read in an excellent article only yesterday 

... as medical testing became more sophisticated there was a shift in this philosophy[that seeing and listening to patients was valuable to doctors].  If the patient complained of an ailment and the medical test didn’t pick something up, the focus turned to the psychological state of the patient.  Maybe the patient was crazy.

The Wesseley school have gone a step further - any patient that even wants the medical tests done is clearly crazy. Tests shouldn't be done because they might encourage these people to go on mistakenly believing they are sick. (Seriously, this is advice they give out to GPs.) Or, heaven forbid, they might prove these people are really, physically sick, and then where would the psych school's nice little ME cash cow go? Can't be having that, huh?

Here are highlights from the responses to Steve Connor's article in the Independent. You decide who is deluded.

Regarding the cohort of patients used in the CDC study into XMRV in ME/CFS please consider the following direct quote from their recently published paper :

Direct quote from CDC paper:

"Our study is the first to evaluate XMRV infection in persons with CFS and healthy controls from the general populations of Wichita and Georgia. These CFS cases are different from CFS patients seen in general practice and referral clinics; of the participants from the population based study in Georgia, only half had consulted a physician because of their fatigue, about 16% had been diagnosed with CFS, and 75% described an insidious onset to their illness that had no obvious relation to an acute infectious disease."

Only 16% had been diagnosed with CFS .Only half of those used in this study had fatigue of a nature that prompted them to consult their doctor. 75% did not fullfil the basic criteron for diagnosis that is becoming ill after an infection. 

The results of this study were going to be skewed from day one because the vast majority of the patient sample used did not suffer from the illness that was being studied. 

Would this be acceptable in a medical study investigating cancer or diabetes ?


XMRV is a RETROVIRUS, not a virus.
A Retrovirus is never benign in humans and can lead to lymphoma-type cancers.
The other 2 retroviruses are HIV and HTLV-1....The CDC (USA) and Kings College (UK) teams are paddling around in sunny, shallow waters like small boys fishing with nets for minnows. 
ME is a shark of an illness. 
It lives out in very cold, deep and dangerous waters, which is where the patients are desparately fighting for help and which is where we have to go in order to help them.


Despite the ME community having a strong belief in the link to this virus, I know its true to say that all we want is for investigations to be carried out to the very end. If it doesn't pan out, ok, then lets move on with the research.

What has angered all of us so much is that there does seem to be a strong agenda for certain groups to disprove it, and as for the CDC, I feel fearful to have a group who embezzled funds earmarked for ME research having the power to silence the WPI, and Dr Alter.


"However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV."

Since these scientists aren't named, readers can't examine whether they might be among the several who have trivialized ME/CFS and may feel ashamed if XMRV turns out to be the cause. PNAS is universally understood to be the world's #3 or #4 journal for biomedical research, and it is undisputed that PNAS and its chosen reviewers had already judged Dr. Alter's paper to be reliable, prior to the intervention/censorship by political appointees.

Alter's career is not exactly a joke: he figured prominently in the discovery first of the hepatitis B virus, and later of the hepatitis C virus. To strike two such blows in one lifetime is extremely rare and could well have merited mention in this article. Some 300,000 Americans were infected with hep C by blood transfusion, prior to the risk per transfusion plummeting from 30% to 0.01% thanks largely to Alter's exertions. Dr. Lo is also a discoverer of novel microbes.

The Lo/Alter results concord with those of WPI, the US National Cancer Institute, and the Cleveland Clinic. Other results certainly discord, for reasons yet to be determined. This dispute must be decided in the open by the virological community. For appointee bureaucrats to go around censoring science is a breach of the public trust and a positive outrage.

Eric Johnson, USA


First, XMRV is not a virus but a retrovirus. What's the difference? A virus causes the flu. The best known retrovirus, HIV, causes AIDS. A retrovirus changes the DNA or RNA in your cell and you have it for life.

Second, the CDC did not find XMRV because they created a study intended to NOT find it. Please see comments by Suzanne Vernon of the CFIDS Association of America:

Third and supported by the link above, it is the CDC study, not the NIH/FDA study that is seriously flawed. The NIH study was peer reviewed and approved for publication in PNAS when a decision was made to hold publication of both studies. 

And Fourth, in response to your statement: "Treatment can include cognitive behavioural therapy, a psychological approach to treat people with the severest symptoms. Physical treatment can include graded excercise therapy, where patients are encourage to gradually do more to combat their feelings of exhaustion."

If someone has true ME/CFS, Cognitive Behavioral Therapy and Graded Exercise Therapy won't make them better, and they may very easily be harmed by GET. Exercise exacerbates symptoms of ME/CFS and can leave a person bed bound and in intolerable pain for months or even years. 

It is a disgrace to your country and your medical system that these "treatments" are recommended for patients with ME/CFS, when they are ineffective and even harmful. This kind of "treatment" is inhumane


  1. Passing on a friend's comment:

    'if you haven't used "Their so-called "research" is a poorly-disguised trivialisation of a severe, multi-dimensional disorder" - I think it's a nice phrase.'

  2. Did you hear that they are now publishing the FDA/NIH study - they have done some additional tests as requested but the results are still the same.

  3. According to posts on Phoenix Rising today

    FDA/NIH Paper will be published
    The CAA posted this morning. it will be out "within weeks." The PNAS editor is on vacation, so I couldn't get a comment from him for CFS Central.

    Mindy Kitei
    CFS Central

  4. Yeah, I just loved the part about GET to help patients with their FEEEEELINGS about being tired.