The New York Times is the most influential paper in the English speaking world. It gets hundreds of op ed applications a day, and it just chose to publish a powerful, powerful editorial on chronic fatigue syndrome.
Coming on the tails of the Institute of Medicine report Julie Rehmeyer, a journalist with ME/CFS, hit’s all the right notes in her piece aptly titled “A Disease Doctors Refuse to See” (literally and metaphorically).
Julie asks whether the IOM report will result in doctors and the NIH taking this disease seriously or will they chose to continue not to “see” it? Will they ignore the widespread distress out there and continue doing nothing about it?
It’s a great question for the officials at the NIH – who will be immediately aware of the editorial – to grapple with. They have a lot to grapple with right now. The Pathways to Prevention (P2P) and IOM reports were federally funded. Produced by prestigious organizations (IOM and NIH) – not wild-eyed advocates, they were created to produce…pathways to preventing this illness. The P2P’s authors, in particular, (a group of individuals with no associations with ME/CFS), laid out a roadmap that asserts major changes are needed at the NIH.
Whether we will see those changes and what can we do to promote them is the big question we as a community will be facing in the aftermath of the IOM and P2P reports (uncompleted).
It’s not going to be easy. Julie pointed out some of the callous and even juvenile comments some doctors left in response to the recent positive Medscape article. The same smirky comments have no doubt floated through some circles at the NIH.
If significant progress is going be made NIH officials are going to have reexamine assumptions. Assumptions like these diagnoses are diagnoses of convenience (wastebasket diagnoses), that people chose them to get out of working, that these are second-order disorders not worthy of significant funding.
“Federal agencies will have to start making an investment in this disease that’s proportional to the devastation it causes.” Julie Rehmeyer
They’re going to have accept that these diseases cause real ‘devastation”. Milquetoast, second-order disorders do not cause “devastation”. Sore throats do not stop people from working. Allergic rhinitis does not cause people to lose their careers – to end up bedridden.
There is an immense amount of suffering in ME/CFS and FM but I believe suffering must be present in the NIH as well. I think some people there know this disease is real. That it causes profound suffering; that they as an organization have a lot to answer for.
Knowing ME/CFS is real and doing nothing about it – that is suffering as well. Burying an illness like ME/CFS and knowing you’re burying it – that is painful.
It takes a lot of courage, however, to take a stand that ME/CFS is real and serious in an environment that’s been belittling it for decades. To take a stand that we are as a organization have to change. That we can’t go on this takes enormous courage.
We have to help them out. The IOM and P2P reports and Julie’s piece are giving them room to speak out and we have to keep creating that room. We have to keep creating the “space” they need to come forward – to advocate for change – to be our partners. Every piece like this, every positive action we take is a blow for freedom for us – and for them.
- Check out Julie’s op ed piece here.
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
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