Is a Cure for Chronic Fatigue Syndrome Really a Big Step Closer?

Posted by: Maff

Maff

Since Thursday of last week when news of research linking the XMRV retrovirus  to chronic fatigue syndrome hit the headlines many patients (and I suspect their doctors) have been wondering what exactly this finding means.

The amount of media attention this discovery by the Whittemore-Peterson Institute for Neuro-Immune Disease (WPI) generated in the press was unprecedented. After having the WPI press release delivered to my email inbox, the next day my mum handed me a copy of The Independent (one of the major "serious" national newspapers in the UK) with a front page article asking 'Has science found the cause of ME?' There was also an editorial piece coming down squarely on the side of us much maligned chronic fatigue syndrome (ME/CFS) patients and concluding that it was about time we were taken seriously.

It is rare to find any ME/CFS news in the mainstream media but the story was the same across the board. The London Telegraph stated 'Most cases of chronic fatigue syndrome linked to virus', 'Virus Is Found in Many With Chronic Fatigue Syndrome', reported the New York Times, while the Washington Post ran with 'Virus Associated With Chronic Fatigue Syndrome'. So the media certainly thinks this is a big deal for us ME/CFS patients but what does the wider ME/CFS community, including patients, doctors and researchers, think of the results of this study.

One can't help but note that this is not the first time a virus has been seen as the cause, or at least a major contributor to ME/CFS, with the Epstein-Barr Virus (EBV) and Human Herpes Virus 6 (HHV-6) being prime examples. Both have been found in significant numbers of patients. Indeed even a retrovirus such as XMRV, which is now causing such a stir, has previously been found in ME/CFS patients.

Dr. Elaine DeFreitas of the Wistar Institute in Philadelphia discovered in the early 1990s a novel human retrovirus in ME/CFS patients. Her finding was subsequently confirmed by two other prominent researchers as well as a  commercial laboratory. After Dr. DeFreitas had published a meticulous paper in a top journal and was almost done sequencing the virus' genetic code the The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) reportedly engaged in a smear campaign against her as her findings did not fit with their psychological views of the causes and symptoms of the disease. The work was not finished and no other researcher has dared take up the baton.

So is XMRV THE cause of ME/CFS and the key to successful diagnosis and treatment as the avalanche of media attention may lead some to believe? In a Q&A session in the New York Times, Dr. Nancy Klimas, an immunologist specialising in ME/CFS and a board member of  International Association for Chronic Fatigue Syndrome (IACFSME), is cautious.

She states that "It is important not to take these new findings about the XMRV virus as anything more than an exciting new development. We need confirmatory studies, then studies to see if the virus is contributing to the cause of illness persistence and symptoms."

"The good news is that if XMRV is linked to C.F.S., there are many antiviral drugs that have already been safety tested in H.I.V. that may inhibit viral replication. So those studies could be designed very rapidly."

Dr. Klimas also suggests (and many experts will no doubt agree) that XMRV may be just one of several viruses including EBV, HHV-6 and enteroviruses, that may become reactivated in people with ME/CFS due to immune dysfunction - rather than actually causing the disease 

The researchers at WPI who conducted the study, led by Judy Mikovits, Ph.D., themselves cautioned that the results far from prove that the virus causes ME/CFS. They admit it may be well just be part of the picture. They suggest that the virus may at least contribute to the development of the disorder, however.

William Reeves, head of the CDC's CFS research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS". The CDC and Reeves have been widely criticised by the ME/CFS community for lack of progress in uncovering the cause(s) of the disease but Reeves says the CDC is already trying to replicate the WPI findings.

The patient community online has been a buzz over the past week since the news of the findings first broke. Cort Johnson, friend of The Environmental Illness Resource and respected ME/CFS research reporter, has set up a forum section specifically for XMRV-related topics on his website Phoenix Rising which already has many hundreds of posts. ME/CFS patients all over the world are using the internet to discuss what the study results mean for them. Will this lead to a diagnostic test and treatment? Does this mean ME/CFS is contagious? Does ME/CFS run in families? These are just some of the question being asked.

I encourage you to post questions in our Chronic Fatigue Syndrome Forums or visit the XMRV forums at Phoenic Rising and join in the discussions.

My own feelings are that the discovery of the XMRV retrovirus in so many ME/CFS patients is certainly important but needs to be confirmed by other studies. I think it is likely to turn out to be another piece in the puzzle of what is an extremely complicated disease rather than THE breakthough the media frenzy would suggest. As Dr. Klimas pointed out one major positive is that drugs to fight retroviral infections are already well studied and widely available due to the huge research effort into the HIV virus. If the XMRV findings are confirmed then these treatments may turn out to be effective in at least a subset of XMRV-infected ME/CFS patients as well.

However, the biggest positive to come out of this research by WPI in my humble opinion is not the result itself but the kick in the behind it seems to have given the CDC and other governmental and medical organisations to get their acts together and seriously investigate ME/CFS. Let's hope WPI and other independent and semi-independent ME/CFS research institutes continue to further our understanding of the disease and force more action from governments and the medical profession.

What are you thoughts on all this? Please let us know in the comments section below and in the forums.

 

 

 

 

About: Matthew Hogg ("Maff")
Diagnosed with M.E./chronic fatigue syndrome aged only 11 years old and subsequently associated illnesses including irritable bowel syndrome (IBS) and multiple chemical sensitivity (MCS). Despite his own struggles he has constantly sought to educate and support others suffering from such "invisible illnesses" through his website, The Environmental Illness Resource. He fully recovered from MCS using his own approach and holds a Bachelor of Science Degree in Nutritional Health.

 

 

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written by MartinWhite, November 05, 2009
Want to see something interesting????
go to www.cdcchatter.net and go to the section titled: "New progressive leadership needed for CFS at CDC"
Posted by: Anonymous on Tuesday, September 29, 2009 - 12:00 AM.
Calls for new progressive leadership in CDC's Chronic Fatigue Syndrome (CFS) program and a more appropriate location in the CDC organization, as well as concerns about use of CDC funds for CFS.
The HHS Scientific Advisory Committee for Chronic Fatigue Syndrome and the International Association for CFS/ME have formally recommended a change of leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education. They recommend "that the CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community." Based on estimates of increasing prevalence and the poor track record after 25 years of effort, the IACFS/ME is highly critical of the proposed 5 year strategic plan and urges that the CFS program be relocated to the National Center for Chronic Disease Prevention and Health Promotion which "contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS."

Also at issue is the possible misuse of funds. Formally testifying before the CFSAC, Kim McCleary, President and CEO of the CFIDS Association of America, detailed concerns about the management of CDC funds allocated for CFS research.

Minutes of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, October 2008

Testimony of Kim Mcleary October 2008

CFSAC recommendations, May 2009

IACFS/ME's recommendations on CDC's 5 Year Strategic Plan for CFS Research, July 2009

11/2 UPDATE - Looks like the CDC’s chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some ’splaining to do in Washington. A possible research breakthrough - the discovery of a correlation between CFS and a retrovirus related to the AIDS virus - has fired up the medical community in recent weeks. "This is going to create an avalanche of subsequent studies," Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month. But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far.

Read the Atlanta Unfiltered article Officials Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

***COMMENTS ON THIS STORY HAVE BEEN TURNED OFF AS THEY VEERED TOO MUCH TOWARDS PERSONAL ATTACKS***
-----------------------------------------------------------------This site is meant for CDC people (and outsiders if they know about it but most don't) to talk about CDC issues. There were so many negative comments about the CDC/CFS program under Reeves BY THE CDC STAFF and some comments that the webmaster considered personal attacks against Reeves, that the 36 comments were removed. The webmaster allowed an update that takes you to another site with an article written about the CDC and its CFS scandal. But, if you want to see the comments from the CDC staff themselves that were removed, go to the SEARCH box on the bottom of the page on the left side and put in CFS . This will bring up all the comments that were removed fro public viewing. Very interesting to hear the CDC staff complain about the CDC/CFS/Reeves. You don't need to be a CDC staff member, but most of the public did not know this site exsisted. It does not belong to the CDC but they must allow it according to law, the CDC people just can't go to the site on CDC time or using their computers. WWW.CDCCHATTER.NET -
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written by MartinWhite, November 05, 2009
from Hillary Johnson’s blog at http://www.oslersweb.com (I love that woman’s writing and detective skills!). Ms. Johnson noted that UNUM stock took a tumble and maybe it was because stockholders saw the Op-Ed in the Times. As Ms. Johnson said: “Something made stockholders start dumping UNUM shares at about 3 pm Wednesday afternoon. UNUM is the largest disability insurer in the world, with ties to the shrink lobby in the UK and a 20-year commitment to making sure no one with “chronic fatigue syndrome” receives disability support…”Did any UNUM stockholders happen to read the Times op-ed today and notice the comment about the CDC’s desire in 1987 to protect disability insurers from making “chronic disbursements”?
Now this gave my husband and I quite the jolt. We had long assumed that the CDC and NIH were somehow involved in the insurance industry to keep from having to pay out Long Term Disability (LTD) to those with CFIDS. The HIV/AIDS people were “good enough” to die quickly from their disease and not cost UNUM much money. But, those of us with CFIDS did not die quickly, we lingered for years and decades and that was just too costly. I know I applied for both private (self-employed) LTD and life insurance and was turned down flat for LTD but accepted for life insurance. At that point the only illness I had had was a very recently diagnosed CFIDS/FM. Until that point I was the picture of perfect health and did not cost the health insurance company very much except the occassional check-up, nothing more. But the insurance company got hold of the doctor’s file that stated I had CFIDS and it was all over. I would be sick forever but would not die for some time. That was in 1993 and the insurance companies KNEW that CFIDS was an almost forever disease and one that would destroy their balance sheets if they paid out on it. So they didn’t.
NOW, where am I going with this? IS it not time to investigate the relationship between the disability insurance companies and the CDC and NIH?? Sounds like a big odd conspiracy theory, but, if someone can explain to me why companies like UNUM can get away with murder in not paying for the CFIDS sick but pay out for all other diseases including the life-time disabling, then offer up a good answer.
Again, more possible illegal activities with the CDC/NIH and MONEY. Not just for funding as was shown in the above, but also the public insurance companies. Do the idiot Brit shrinks who are buddies with Reeves have something to do with this? Does Reeves and others going back to the late1980’s have something to do with this? Could they be smart enough to keep this game up this long???
Just more food for thought.
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written by VeryMad-CDC SITS ON DOCUMENTS, November 05, 2009
By ALISON YOUNG-The Atlanta Journal-Constitution
Sunday, April 26, 2009
http://www.ajc.com/metro/content/metro/stories/2009/04/26/spotlight_cdc_documents.html
CDC sits on documents
Employees at the Centers for Disease Control and Prevention have generated about 4,000 pages of documents assessing risks to the agency’s reputation posed by The Atlanta Journal-Constitution’s reporting.
But the CDC is keeping those records secret, despite directives from the Obama administration that federal agencies presume government records are open to the public under the federal Freedom of Information Act.
Release of the CDC records “would interfere with the agency’s deliberative process and have a chilling effect on employee discussions,” CDC freedom of information officer Lynn Armstrong said in a letter sent this month to the AJC.
The AJC asked for the documents in January 2007, after the newspaper learned that the agency was conducting risk analyses of this reporter’s news-gathering rather than releasing information of interest to the public. At the time, the AJC was pursuing stories about morale problems and an exodus of key scientists from the Atlanta-based agency, CDC’s chaotic response to Hurricane Katrina, lab animal welfare violations and costly taxpayer-funded construction projects at the agency’s campus on Clifton Road.
For complex document requests, the CDC reports that its median processing time is just 38 days (and just 11 days for simple requests). But several AJC requests have been pending for a year; some for more than two years.
The newspaper learned CDC staff were performing risk assessments on my reporting after a copy of one of the SWOT — strengths, weaknesses, opportunities and threats — assessment memos was leaked in the fall of 2006. A few weeks earlier, the AJC requested documents about a $10 million no-bid contract; CDC officials directed an employee to analyze threats if the information became public. The firm that got the contract was associated with and recommended by a volunteer adviser to then-CDC Director Julie Gerberding.
According to the leaked memo: “No assurance that CDC received the best value solution to its concerns because [of the] procurement process used.” It noted a “potential conflict of interest” and said “Negative publicity will further question top CDC management, as it was so involved in the early process.”
After publishing an article about this memo, the AJC filed its January 2007 FOIA request for all other such memos and risk documents. CDC had released nothing until this month, when it sent a response by FedEx on April 1 that contained 46 pages of documents, most of which were copies of articles published in the AJC or other publications, and a letter denying access to about 4,000 other pages of records.
On Jan. 21 — his first full day in office — President Barack Obama issued a memo to all federal agencies reinforcing the importance of the Freedom of Information Act. Government transparency is important to democracy, he said.
“The Government should not keep information confidential merely because public officials might be embarrassed by disclosure, because errors and failures might be revealed, or because of speculative or abstract fears,” Obama said in the memo.
Until recently, federal agencies operated under a 2001 directive issued by then-Attorney General John Ashcroft. His memo directed agencies to emphasize protecting institutional, commercial and privacy interests over public disclosure.
Obama’s memo and additional guidelines issued in March by Attorney General Eric Holder instructed federal agencies to focus on releasing information.
“HHS is committed to honoring FOIA requests in a manner that ensures our department is open, transparent and respects the FOIA,” spokesman Nick Papas said. “If The Atlanta Journal-Constitution decides to appeal the CDC decision on the case in question, that appeal will be reviewed at the department level.”
The AJC has appealed.
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