Press release for Washington post ad

A big 'wow' to the MCWPA for bringing this off.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

--Possible New HIV-like Retrovirus in Blood Supply--

CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life.  CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.  

(Photo: http://photos.prnewswire.com/prnh/20101206/DC12334 )

ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.  

"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million).  Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .

About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:  Sita Harrison/Tina Tidmore 561-313-1835 205-680-6890 Media@mcwpa.org

SOURCE MCWPA

A letter to my MP

[*Please note - the awesome SMC query letter that I attach to the bottom of this was put together by Chris Douglas of the Facebook group XMRV Press Releases .]

Dear Andrew

Please excuse this being an email rather than a 'proper' letter - there are a few web links in it, and I thought they would be easier to follow from an email!

I'm writing to you as my MP on one broad subject, and one narrow.  The broad is the general approach that is taken in this country (largely thanks to the former government) towards myalgic encephalomyelitis.  The narrow is concern over how the Science Media Centre set up by New Labour is filtering the science surrounding this illness to the national press, and possibly also our politicians.  (Myalgic encephalomyelitis, or ME for short,  is also sometimes called Chronic Fatigue Syndrome - which is rather like calling Alzheimer's 'Chronic Forgetfulness Syndrome', so I will stick with the term ME in my letter.)

You might have seen reports in the news yesterday from Dr Jill Belch's research team at Dundee University, ( http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884 ) who have found clear evidence of white blood cell abnormality in children with ME.  This is evidence that has previously found in adults with ME - a truth which in contrast to yesterday's mass news coverage has been barely whispered in our national press before now.

Please find below, a copy of a letter sent to the Science Media Centre's Board and Scientific Advisory Panel which seeks clarification of their press release about US research into a new human gammaretrovirus and its links with myalgic encephalomyelitis.  I think (hope!) it might interest you as my MP (I live in Whitwick and have suffered with ME for almost six years now).  You may not have heard of this research - in fact, I would be surprised if you had, since although it was very widely reported worldwide, it has barely seen the light of day here in the UK.

I hope that you will not mind me writing to you about this - I do feel guilty about adding to what I'm sure is already a huge workload.  I've actually been trying for a while to raise the nerve to write to you on the subject of ME, the exciting new research that is being done around the world (while the UK still throws money at talking therapies - for a condition recognised by WHO since 1959 as neurological), and the way it is handled in our country. This latest press release from the SMC finally pushed me into it, along with the announcement recently that anyone who has ever had ME/CFS will be banned for life from donating blood in the UK from 1st November this year, bringing the guidelines for ME sufferers into line with those for other relapsing remitting conditions like MS - and safeguarding our national blood supply at last from what may be a transferable illness. It really is time UK science and health stopped lagging behind the rest of the world. Didn't we once have the reputation for leading the world in the field of Science?

It frankly concerns me that MPs as well as journalists may make the SMC their first stop for information on the subject of ME, since the ME 'expert' there (Professor Simon Wessely - the man who claimed the Camelford poisoning was a mental disorder) is not a biologist, virologist or biochemist but a psychiatrist who firmly advocates the idea that ME is a mental disorder.  All information on ME and anything connected to it emanating from the SMC seems to reflect this, with the possibility of viral cause or connection routinely rubbished. (Professor W has yet to explain how white blood cell abnormalities such as those found by Dr Belch's team could be caused by a mental disorder or cured by Cognitive Behavioural Therapy - but I digress.) The SMC has yet to issue a single press report on the subject of XMRV (or any research indicating a viral connection to ME) that did not have a negative spin. 

This same bizarre view of ME as a mental disorder permeates the NHS and NICE Guidelines, and has led to children with ME being removed from their parents and sectioned in mental health institutions on the grounds that they were 'faking' and the parents were 'encouraging the child's abnormal illness beliefs'.  The parents' 'crime' being that they insisted their children were ill, not mad - and insisting that their children get help. Children with ME are labelled 'school refusers' and adults with it 'malingerers'.  It's almost impossible to find words to tell you how hurtful it feels to be on the receiving end of that. Before ME, I was an active, fully employed woman. I did voluntary work in my spare time, and only the year before I became ill completed a 100km trek in Iceland to raise funds for Macmillan Cancer Relief.  I now need a wheelchair for walks longer than ten minutes, cannot drive, and suffer real physical pain every day. And I'm lucky - about 25% of those who share my condition are completely bedbound. It is a mystery to me how anyone can say such a massive physical change in me is caused by me simply 'believing I am ill' or assert that psychotherapy could treat or cure my condition (I've tried it, since it was all the NHS could offer me - it helped not a jot).  Research from around the world has been building for years that there is a viral link (whether causal or not) to ME, and that ME sufferers show very physical symptoms like white blood cell abnormality. In short, it's clear that what we need is more serious biomedical research and less psychiatric hoodoo. Whatever you read in the press, my dream and that of everyone with this illness is not to live as invalids supported by others for the rest of our lives, but to have back enough of our 'old' lives to be useful members of society again. Research such as that done up in Dundee is a shining example of what is needed, not money wasted on talking therapies (which do no good) and Graded Exercise Therapy (which has been proven to make people sicker).

I'm struggling to keep pace with and understand a lot of the science around my illness - I would have struggled with it even at the top of my mental form, but these days I deal with cognitive (and of course, energy) problems too, courtesy of ME. It would really help to be less worried that our national press and MPs are being fed biased information (not least because the Press is often where I have to get my own information from).  It would be wonderful if as my MP you could take an interest in the subject. The All Party Parliamentary Group on ME has reformed after the election, and should be sitting soon - I'm sure they could provide you with lots of information; maybe you might even have the time to get involved?  

If you could help us obtain answers to the queries in the letter copied below, and perhaps keep your eye on how ME is being treated in general, I and about 250,000 people with ME here in the UK would be grateful. I'm very happy to try to find more information for you if you have questions on the subject (though I'm very much not a scientist!)

With best regards,

Jane Winter

Ref press release dated 23.8.10: Expert reaction to PNAS study on virus sequences found in blood of chronic fatigue syndrome patients

Dear xxxx
Please can you clarify the following points.


1. Why the press release title uses the term ‘virus’ (as per swine flu), does not state that the PNAS study discusses a ‘retrovirus’ (as per HIV) and does not explain the very significant difference between the two ?


2. Why Professor Weiss and Professor McClure do not qualify the statements below


“...the mouse retrovirus [i.e. the murine leukaemia viruses described in PNAS] is not the same as the one linked to CFS in a report published last year [i.e. XMRV as described in Science]…” Weiss


“They describe murine leukaemia virus (MLV)-related sequences that are genetically distinct from XMRV.” McClure


by explaining that:


(a) XMRV is, in fact, an MLV-like virus [1][2][12]


(b) the nomenclature ‘XMRV’ was created by Urisman et al to describe the MLV-like virus discovered in prostate cancer tissue [3]


(c) the ‘XMRV’ discovered in Myalgic Encephalomyelitis (ME) patients has known genetic differences to that discovered in prostate cancer (i.e. these are different variants of XMRV)


“Thus, the complete XMRV genomes in these CFS patients were >99% identical in sequence to those detected in patients with prostate cancer.” Lombardi et al, October 2009 [4]


“[F]ive years ago, a retrovirus resembling a murine leukemia virus (MLV) was found in patients with prostate cancer (1), and last year, a similar gammaretrovirus was identified in patients with chronic fatigue syndrome...” Courgnaud et al, August 2010 [5]


(d) subsequent presented but unpublished data (which one would expect the Professors to be aware of and mindful of when preparing a press release) have elucidated these differences, have been complemented (rather than contradicted) by the PNAS paper and may result in nomenclature amendments to avoid further confusion in scientific reporting of MLVs, MLV-like viruses and their respective variants.




3. Why neither Professor Weiss nor Professor McClure explain that the reason why the ‘ME XMRV’, specifically, may not have been identified in the PNAS study (nor in any other negative study) is that the original Science study (by Lombardi et al) has not yet been replicated ?


“However, in the study of Lombardi et al. (3) and studies reviewed subsequently by Silverman et al. (22) the evidence for XMRV infection in humans not only involved detection of viral nucleic acids using PCR, but also reported the detection of viral antigens, detection of anti-viral antibodies, the ability to culture the virus in a prostate cancer cell line, the detection of gamma retrovirus particles by electron microscopy, and transmission of infection to macaques. In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al. (3), nor our own study, has attempted to fully replicate that study.” Lo et al [1]




4. Why both Professors Weiss and McClure present criticisms of the PNAS paper but fail to discuss the significant positive outcomes of this work, such as the validation of Lombardi et al’s finding of a retroviral presence in ME ?


“Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. (3) that MLV-related viruses are associated with CFS and are present in some blood donors.” Lo et al [1]


“This study supports a previous investigation[Lombardi et al. Science October 23, 2009 326: 585]that showed XMRV, a genetic variant of MLV-like viruses, to be present in the blood of people with CFS. The study demonstrates a strong association between a diagnosis of CFS and the presence of MLV-like virus gene sequences in the blood.” US Food and Drug Administration [2]


“In contrast to the study that first linked XMRV to CFS, the researchers found a more genetically diverse group of MLV-related viruses….However, these findings do support the earlier study's results.” US National Institutes of Health [6]




5. Why Professor Weiss criticises the PNAS paper for being “based on small numbers” (i.e. 37 samples and 44 controls) without referencing that the “reputable scientific groups” in the Netherlands and at the US CDC (which both failed to detect XMRV in ME patients) used similar numbers (32 samples/43 controls and 51 samples/56 controls respectively [7][8] ?




6. Why Professor Weiss states that he is “sceptical of the claim” [of “an association between a retrovirus of mice and human chronic fatigue syndrome”] but does not declare his own co-authorship of papers which seek to disprove human retroviral infection [9][10] nor state that Lo et al took extensive steps to ensure that they did not pursue a ‘rumour virus’, as described in one of these papers?


“Voisset and coauthors (20) recently reviewed the pitfalls encountered in the identification of new retroviruses (“rumor viruses”). False-positive results can occur for a variety of reasons. Viral gene sequence specific PCR primers can non specifically amplify nucleic acid sequences that differ from the target sequence. For this reason, we sequenced every positive PCR product (every amplicon of the predicted size) and confirmed MLV-related gene sequences in every instance.” [1]




7. Why Professor McClure’s involvement in a research study that failed to replicate the Science paper's methodology and, hence, its findings [11] was not considered to be a conflict of interest in reviewing the PNAS paper (and its bearing on the Science study’s findings), and why this potential conflict of interest was not declared in the press release ?




8. Why Professor Weiss does not specify that one of the “reputable science groups in the UK” was led by Professor McClure [11] ?




9. Why US scientists who have been involved directly with both the PNAS and Science papers were not invited either to contribute to this press release or given the opportunity to reply to its remarks ? Perhaps this would have facilitated a more balanced and constructive appraisal of the research which, in turn, may have encouraged a pro-active and sustained media interest in this unfolding science.




Citations


1 Lo et al, August 2010
http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html


2 FDA, August 2010
http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm


3 Urisman et al, March 2006
http://www.plospathogens.org/article/info:doi%2F10.1371%2Fjournal.ppat.0020025


4 Lombardi et al, October 2009
http://www.sciencemag.org/cgi/content/abstract/1179052


5 Courgnaud et al, August 2010
http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


6 NIH, August 2010
http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm


7 van Kuppeveld et al, February 2010
http://www.bmj.com/content/340/bmj.c1018.full


8 Switzer et al, July 2010
http://www.retrovirology.com/content/7/1/57


9 Griffiths et al, July 2002
http://jvi.asm.org/cgi/content/abstract/76/14/7094
Novel Endogenous Retrovirus in Rabbits Previously Reported as Human Retrovirus 5


10 Voisset et al, March 2008
http://mmbr.asm.org/cgi/content/abstract/72/1/157
Human RNA "Rumor" Viruses: the Search for Novel Human Retroviruses in Chronic Disease


“For many years, there have been sporadic reports of additional human retroviral infections, particularly in cancer and other chronic diseases. Unfortunately, many of these putative viruses remain unproven and controversial, and some retrovirologists have dismissed them as merely "human rumor viruses."”


11 Erlwein et al, January 2010
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519
Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome


12 CFIDS Association of America, August 2010
http://www.cfids.org/mlv/pictorial-essay.pdf




Further Information


The Whittemore Peterson Institute (WPI) press release to the PNAS paper
http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf


The WPI President’s statement about the PNAS paper
http://www.youtube.com/watch?v=ne7if7FKJFg


The WPI Research Director’s statement about the PNAS paper
http://www.youtube.com/watch?v=9ZEwQUg7o6I

DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

In a letter to Andrea, the Dept of Health have described ME very clearly and plainly as a 'relapsing condition'.  Since mental disorders cannot cause relapsing, remitting conditions, may we hope the treatment of ME will now be 'brought in line with' the treatment of other relapsing conditions such as MS in areas of our health service other than criteria for blood donation?  And in our Benefits system too?

Papers and panics

So, as Elle mentioned in her comment yesterday, we may soon get the FDA study after all (details below).

Yesterday I was talking to Anth about how much the psych school attitude to ME reminds me of a witch-hunter's attitude to those accused of witchcraft - namely, if you protest your innocence, to a witch-hunting mind that proves your guilt in their looking-glass-world mind.  With particular reference to events in Salem, I remarked that witch panics have historically rarely (if ever) been ended by appeals to reason or decency. They have ended when they became too embarrassing to higher authorities, and/or when there has been a greater vested interest in them ending than continuing.

Maybe the CDC has overreached itself in recent weeks and crossed that 'become too embarrassing' line?



Quoting from ProHealth:

The world-famous paper by FDA/NIH researchers reporting that they found evidence of XMRV in ME/CFS patients’ blood will be published "within weeks," according to the CFIDS Association of America.

A posting dated Friday July 9 on the CFIDS Association Facebook page notes that a sentence has been added to their article titled  “XMRV Link Accelerates Scientific and Media Interest.” 

Specifically, the revised article now states, at the end of the eighth paragraph: "The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks."

Though no source is cited, the CAA further commented (just before 11 am Pacific time) on Facebook that "The information comes from several well-informed people close to the study with whom we are in regular contact."

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: 
http://www.cfids.org/xmrv/070110study.asp

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