Copyright © Sarah Shenk Febraury 2010. From www.hfme.org
There has been much media publicity lately over a small research study that claims to have made a connection between “CFS,” or "ME/CFS", and a retrovirus. While many are touting this as a huge medical breakthrough, there is a large group of doctors, scientists, patients and advocates who look at this information with tempered enthusiasm.
Why? These people are well-versed on the topic, and realize that before moving forward with great jubilation, more information is required. We realize that this research in and of itself, means precious little, so we have not only adopted a more "wait and see" attitude, but are of the opinion that this research is most likely relatively unimportant in the scheme of things and would not place it anywhere near the top of the list in the arena of much needed new M.E. research. We also worry that this research, and the sensationalism with which it is being reported, will detract from the need for genuine M.E. research.
The following comments from M.E. researchers, patients and advocates may help you understand better the "wait and see" attitude these folks have, and why it is so appropriate.
Additionally, as you consider the following insightful comments, please keep in mind what the Whittemore Peterson Institute itself says about the blood samples used in their recent retrovirus study:
"Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study."
Reference link: WPI website
Thus we actually have no way of knowing if any M.E. patients were involved in the study at all, and that makes the results suspect to those of us who do have M.E. Knowing what we know about the wastebasket label "CFS", it makes us feel that the results of this study may not ever come to have any real value at all for M.E. patients, nor for many of those given a ‘CFS’ misdiagnosis. Perhaps the following comments, taken from an informal group discussion, will shed some light on a few of the reasons we need to consider this research with a healthy dose of skepticism.
Doctor Speedy and ME in search of medical honesty
Phew, as an ME patient it's good to know I'm not the only XMRV sceptic. I'm too scared to talk about it in the community as I'd get ostracised for my non-belief!
ReplyDeleteI am disappointed in Sarah Shenk. It is discouraging to read rubbish like this from a respected charity like Hummingbird Foundation. It appears Shenk has gone out of her way to remain UN-informed about the Nevada cohort and other patients in the WPI study. The effect of her prejudice against the study is to jeer and denigrate the patients themselves. Shenk is colluding in 'us and them' defamation typical of abusive people anywhere. This offensive essay is beneath the dignity of the respected Hummingbird Foundation and does tarnish their good name and reputation.
ReplyDeleteThe Incline Village outbreak was an ME outbreak - even minimal knowledge of the controversial history and events of that period, and the CDC's mishandling of the outbreak, shows that doctors well-informed about ME, Dr. Hyde and colleagues, had diagnosed the patients as having ME - and walked out of the experts' meeting at the CDC in disgust at CDC manipulation of events and plans to derisively name the outbreak as 'CFS' instead of ME. The result of CDC manipulation was that no patients in the US and few in Canada have been diagnosed with ME since that time - North American doctors simply do no use that diagnosis, and instead follow the directives of the malicious CDC and diagnose ME patients with 'CFS'.
However, it slanders and betrays patients all over North America to pretend that very sick patients don't have ME just because their dianosis is called 'CFS' instead. It's not the patients' fault that the CDC travesty of misnaming this disease in North America has persisted for so long.
Moreover, the WPI study cohort included patients from many countries - when the study results were unblinded in December (see video of Mikovits lecture in January for her report of this data), Mikovits found that there were patients from all over North America as well as Australia, UK, Ireland, Germany and elsewhere in their published Science study. These were patients who had travelled across their country or across the world to see the handful of ME-CFS doctors in North America who are experts in this disease (the real disease, not the 'Oxford' definition travesty), and have been treating patients for years. Anyone claiming to represent a respected ME charity should have done their homework and known this.
Or does Shenk suppose that no ME patients exist in North America? Or that no patients have developed ME since the late 1980s when the CDC took it's fateful turn into 'CFS' politics? Does Shenk suppose ME exists only in Commonwealth countries that she and her mates approve of, those that still have doctors who use the ME diagnosis?
This essay is appalling. Shame on Shenk and the once-noble Hummingbird Foundation for releasing it.
Point is that Sarah Shenk showed us that WPI disclosed that it used only patients which met both CFS Fukuda and Canada diagnoses. These do not select the same patient group as ME diagnosis. WPI did not, NOT, use the original ME epidemic patients from the Lake Tahoe cohort.In USA and other places where ME is politically incorrect, good doctors use the same WHO diagnosis code as ME. If you have ME, then do not accept a misdiagnosis of CFS. Hummingbirds is a first-rate resource for ME.
ReplyDeleteBrito, the WPI study includes original Incline Village patients and patients from other regions and countries. Are you aware that the Americans don't use ICD-10, unlike the rest of the world. I don't know the reason for this, but it is true. In other words, if their doctors use ICD-10 codes for diagnoses, their insurance companies would not pay them.
ReplyDeleteRegardless of the WPI cohort argument.
ReplyDeletePeople with ME and CFS are being tested in the UK. At least one long term ME patient (pre-CFS) has tested positive.
We are still a long way from determining what XMRV is doing to PWCFS and ME. It may need a combination of different viruses causing different effects.
Looks like the author thinks she knows ME better than Dr. Peterson.
ReplyDeleteI'd be curious to know how likely she thinks it is that a patient diagnosed with CFS/ME according to the Canadian Criteria doesn't actually have ME.