Saturday, October 9, 2010

A couple of newspaper articles

The Patient Advocate believes, with recent developments, that there is strong evidence that his daughter has crossed over into the Infectious Disease category. (The PA has known this for eight years.) Consequently the PA has begun looking for I.D. doctors in the Twin Cities. His daughter needs a real doctor. The initial inquiries have not been promising. The first response from an I.D. doctor was "This is really new stuff. XMRV may be related, may not. Unknown if cause. But no antiretrovirals known to target XMRV." This did not give the PA much of an opening as it was a fine drawn mixture of inaccuracies and ignorance, disguised behind hubristic certainty. Next up was a response from a virologist: "The bottom line is that the jury is still out on this. In my opinion the CFS/XMRV connection isn't going to pan out, but we'll see". Both of these semi-carefully crafted responses, for which the Patient Advocate is supposed to be thankful - as these Important People take their time out of a busy schedules to write an answer - close the door and yet leave it open a crack. Both are equally progressive and courageous in their opinions. It appears to the PA that most physicians in the Twin Cities believe that ME/CFS is a psychological illness. Where have we heard this before? It is pure shit. The more optimistic of these people say to "get into a clinical trial". That is such a helpful suggestion - as there are, at the moment, no clinical trials available. In addition most clinical trials are localized - and my daughter is housebound. Clinical trials for ME/CFS will never happen in MN. So this getting an I.D. doctor is going to be difficult.

Recently the Patient Advocate read a story in the WSJ - the same newspaper which features our friend Amy Marcus. This article is on the subject of clinical trials, the agonizingly slow development of drug therapies (Provenge is a great example) and what some patients are trying to do about it. The Patient Advocate believes the subject of this article might have relevance to potential ME/CFS treatments. If we wait for large scale clinical trials we will have a long wait - about 100 years.

Here is the article.

In another article in the NYTimes the Patient Advocate reads about bees. The PA is aware that bees have been having their problems over the past few years. What struck the interest of the Patient Advocate was the front page story of an immunologic dysfunction in bees that involves viruses, fungi, immune dysfunction and the gut. While reading this article the PA keep wondering when they were going to mention ME/CFS. With all due respect to bees and the NYTimes, why can't we have a front page article on ME/CFS and leave the bees take care of themselves. People first, bees second.


  1. This is actually better than the response I have had, in another large metropolitan area. I have been seeing a doctor for 20 years, and survived a number of what might be called un-controlled clinical experiments with anti-depressants, etc. My chart now fills two folders. I have a vagus nerve stimulator implant, which may be blocking distress signals from my gut, or may be doing nothing of importance. Nobody knows.

    While this level of ignorance is tolerated vis a vis psychiatry, material from peer-reveiwed publications in virology is apparently required to meet higher standards. Even testing for the virus is rejected, when I offer to pay from my own pocket. Concerns about the status of immune function are dismissed, when I point out I have not been able to register a fever in 15 years. I can demonstrate the 30 bpm tachycardia on standing required for a diagnosis of POTS. This is considered a personal idiosyncracy. Unless it shows up in routine common laboratory tests, no one from mainstream medicine will investigate.

    Some people who will investigate, for a price, really are charlatans. Reputable ME/CFS doctors are hard to find, and deluged with patients. If I had an appointment, which may take years, I would have to drive for several hours to reach one I trust, and at present this is beyond my ability.

  2. So after all these years, and all this work, we are back where we began. "It's all in your head."

    Patricia Carter
    XMRV+, 24 years ME/CFS

  3. RE: NY Times and Bees. You grasped the implications for ME/CFS in such technology, but missed a few other points.

    A. There is a reason most new drugs and technologies are tried out on other species prior to using them on humans.

    B. Bees play an important role in the food chain as well as the economy. You do like to eat do you not?

    You may not have liked the answers you have gotten, but they were scientifically accurate at the time they were given. And, if you gave an accurate rendition of their responses neither one of them suggested that CFS was psychogenic in nature as implied by @Wildaisy.

    Until XMRV, or would that be MLV, are proven pathogenic what is the point of having a test done?

    It is unfortunate that two things that can be tested, immune system function and Orthostatic Intolerance, were ignored in which case run don't walk to the nearest door and find a doctor who is willing to help. Not all GPs ignore their CFS patients - many do assist them in getting appropriate testing. Try Co-Cure's list of doctors.

  4. I also thought about CFS when I read about the bees. Maybe we can someday benefit from all the bee research...

  5. As a clinical psychologist, disabled for 18 years with CFS it is especially galling to hear any MD attribute CFS symptoms to psychological causes. The average MD's knowledge of psychiatry and psychology comes from a six week rotation during their internships. It is remarkable how willfully stupid they can. But I'd wager if the day comes when the NIH recognizes XMRV as the cause of CFS, they will all claim to have thought it was infectious all along.


  6. I am a patient without an advocate. My doctor is the closest thing I have. I would just like to say please stop telling people with CFS that it's mind over matter. that is how I ended up so sick was refusing to listen to my body telling me to stop. It started with HepC and turned into this CFS crap. I am too tired to explain it, but we need help. My next step is going to be a nursing home, and I'm only 51.