I’d like to personally thank David Kaufman, MD who wrote the below comment on an opinion piece in the New York Times responding to the (American) Institute of Medicine’s (IOM) report on ME/CFS. I don’t know who you are David, only that you are a medical professional, but its too rare that medical professionals speak up in name of ME patients in the dark, stress-inducing pit that is the comments section of the internet.
My illness, ME (also known as Chronic Fatigue Syndrome, or CFS), has had a lot of press in the last few weeks due to a report from the IOM, suggesting a new name (systematic exertion intolerance disease) and a new diagnostic criteria. The report stated that remarkably little funding has been allocated to research into the illness, especially considering how many people suffer from it. Something sufferers know all to well.
On the back of this, both the New York Times and Washington Post published opinion pieces from a patient perspective (a cause for celebration in itself).
This has led to many many medical professionals commenting on the articles, reiterating old myths that this disease is actually psychological in nature and that we are lazy, work-shy malingerers. (From experience, doctors who take this viewpoint, tend to also have a “pull your socks up and get on with it” mentality when it comes to ME, which isn’t helpful for any mental health condition I’m aware of either)
They cite the fact there is no one distinct biological test for this illness as proof. They ignore that not enough research has been done to find such a test, and that numerous biological abnormalities have been found in the research that has been done so far.
Yes, many of these studies need repeating and on a larger scale, but no-one is funding that. Two of the most promising bits of research into this disease, a study looking for links between the microbiome in the stomach and ME/CFS led by Dr Ian Lipkin, and a UK-based trial into the immunotherapy drug Rituximab, repeating a trial in Norway, (which found 67% of ME/CFS patients had moderate to major improvement on it, compared to only 13% of controls) are only happening because they have been crowd funded, I.e. Patients and their loved ones are having to pay for their own research.
So, it is nice, for once, to see a comment like this speaking from a medical viewpoint supporting the patients. I’m not sure I like the name Systematic Exertion Intolerance Disease, but I am hopeful the IOM report will lead to a boost in funding in the USA, which may give everyone the answers they are looking for.
This has got me thinking. Whether there’s a psychological element to a medical condition or not shouldn’t affect the level of care a sufferer receives. IBS is another syndrome without “one distinct biological test”, and that can have a psychological element to it, but it’s met with less scepticism than ME. I’m not sure why?
I believe this is the same David Kaufman who is my doctor. He is at the Open Medicine Institute in Mountain View, CA. You can reach him at *email removed for privacy*
Hi Denise,
Thank you so much for this. I’ve removed his email from your comment before approving it as I thought he might not want it displayed publically but have sent him an email with the link.
Just an update, David sent me a very lovely email in response. What a wonderful man 🙂