Comments on: Bitten and shy

By: Willow

Willow — Mon, 18 Oct 2010 01:54:26 +0000

Thanks for acknowledging the seriousness of ME/CFS and the utter failure of medical science to deal appropriately with this disease. While some ME/CFS patients report finding some relief through naturopathy, many others try that and say it’s not worth the money, and go back to being essentially untreated, or at least severely undertreated.

There actually is a lot of good science showing medical causations for this disease, from low NK cell function and abnormal T cell activation, to bioenergetic muscle cell dysfunction, to sleep disruptions, to in many cases cardivascular abnormalities, and in some cases endocrine disruptions. This science remains unacknowledged by health authorities. They get away with this by using bad definitions which include a lot of people with other, unrelated, disorders, including primary depression; so it is made to appear that these abnormalities do not extend to the whole “CFS” group. All of this is documented in the literature.

http://www.sunherald.com/2010/10/09/2540450/chronic-fatigue-puts-millions.html

http://www.cfids-cab.org/MESA/Jason-10.pdf (Dr. Jasons’s study in Journ Disabil Pol Studies; which article is not indexed on pub med, in an apparent political move)

http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf

PS – CFS Central is absolutely a reliable site. Midy Kitei is one of those rare people who has no chronic disease herself or in her family but simply has the sense and compassion to see that there is a population in need of a voice. She attends official ME/CFS meetings and keeps up on all the goings on related to ME/CFS and reports on all this on her blog. Regular news outlets generally publish only the sanitized version of CFS approved by the HHS/NIH/CDC/NICE.

By: Joey

Joey — Thu, 01 Jul 2010 09:13:51 +0000

And thank you for bringing a physician’s perspective to this. I definitely see my doctor’s frustration with my myriad medical mysteries. I’m lucky that he shares those frustrations with me in a productive way instead of simply writing me off, as happens with many patients. Based on your comment I don’t imagine that happens to your patients, however.

By: Joey

Joey — Thu, 01 Jul 2010 09:09:00 +0000

Yes, that’s a good point: the CFS community can be known to overcorrect in the other direction on certain issues. For example, due to Simon Wessley’s CBT/GET obsession, some patients have come to see any suggestion of psychotherapy as an automatic — and terribly offensive! — denial of their illness. Or the situation you mention. These overcorrections are misguided at best and dangerous at worst, but I also think they’re understandable.

By: Joey

Joey — Thu, 01 Jul 2010 09:01:56 +0000

Thanks for sharing your experience. It’s exactly stories like yours that make it impossible for me to simply write off people who have become leery of medical doctors. I’m sorry that you went through what you did, but glad to hear it didn’t send you permanently to the “dark side.”

By: Karen

Karen — Tue, 29 Jun 2010 11:08:05 +0000

I think it would be very interesting to see just who is using alt-med services. I’ve used them myself when I was trying to get pregnant and taking a few months to get an appointment with my obgyn. I’d suspect that there would be a good proportion of people with difficult/unexplained diagnoses or dealing with chronic painful conditions. On infertility forums there are many people asking about acupuncture/naturopaths etc.