An open letter by top ME/CFS doctors to HHS

I’m very, very sick with a reemergence of my original symptoms (drenching night sweats, chills, fever, headache, nausea), so I might be gone for a while.

Reposting from Quixotic: My M.E. Blog:

By now everyone in the ME/CFS community (in America anyway) is familiar with the controversy over the U.S. Department of Health and Human Services (HHS) hiring an outside contractor to develop a new definition of ME/CFS. If you’ve somehow missed everything that’s occurred on this front in the past month, here’s the 50 peso version:

HHS announced that they were going to hire an outside contractor to, among other things, redefine ME/CFS and create diagnostic criteria. The leading candidate was a company called the Institute of Medicine (IOM). IOM had previously been hired to conduct similar work related to Gulf War Syndrome and, by most accounts, completely botched the job, leading to much frustration by GWS sufferers. Knowing this, the ME/CFS community launched a grass roots email campaign to stop the IOM contract. Not long after, HHS announced that they cancelled their plans to hire IOM. The ME/CFS community breathed a sigh of relief. Several days later, HHS reversed course and hired IOM anyway.

Now a group of leading ME/CFS doctors and researchers have published an open letter to the director of HHS imploring her to reconsider the entire project and, particularly, to adopt the Canadian Consensus Criteria (CCC) definition of ME/CFS. The letter is direct, forceful and is cosigned by all the big names. It will be interesting to see if HHS has the guts to ignore this (but history tells us they will).

The letter is republished here on ProHealth.


28 thoughts on “An open letter by top ME/CFS doctors to HHS

  1. currankentucky says:

    Reblogged this on currankentucky and commented:
    Please take some time to read this post. Actions like that currently being taken by the HHS in the US, are negatively impacting the already bumpy road of research. 25% of ME/CFS patients are completely bedridden, have full time carers and severe impacts on their day to day capabilities. Patients need governments who will listen and aid research, not impede it.


  2. currankentucky says:

    I’ll be thinking of you, (as always) and wishing you well while the beast rages. I hope you have some nice pictures to look at when your head allows. Hugs. xx


    • E. Milo says:

      Thank you, Marie. I actually managed to sit in the park and stare at the trees for half an hour yesterday! That was a nice picture. 😉
      Hope you are holding up. Xo


  3. Sending you lots of positive thoughts, love and gentle hugs across the pond to you. I hope your symptoms calm and give you some reprieve very very soon. Thinking of you xx


  4. Reblogged this on my journey thru M.E. and commented:
    Why are ME/CFS sufferers (too tired to think of a more positive word) persecuted like this? Our lives are daily struggles and yet the powers that be don’t seem to be able to grasp that this illness matters in any sense. 250,000 people are estimated to have ME/CFS in the UK. And that’s only counting those actually diagnosed. I suffered for several years before getting finally diagnosed. I am by far an anomaly and compared to many my diagnosis came quickly. 25% of sufferers are severely affected, bedridden, tube fed, unable to do anything for themselves; lost dignity and no quality of life. Given ME/CFS is so prevalent and debilitating why is it maligned and side lined? Please reblog and share this post in any way you can. Raising awareness of our situation is vital and the only weapon we have.


  5. dawnhosking says:

    Reblogged this on dawnyhosking and commented:
    We have suffered enough.


  6. dawnhosking says:

    Hope you feel better soon (((hugs)))


  7. kellygetthin says:

    Reblogged this on kellygetthin.


  8. Have signed, good luck!


  9. Jackie says:

    I’m so sorry you’re experiencing a backslide. 😦 You do so much to take care of your body; it isn’t fair for you to be feeling so much worse. You’ll get back to where you were. I always put pressure on myself when I backslide to hurry up and get back to where it was and it is always counterproductive. It’ll come in time. I’m thinking of you!


    • E. Milo says:

      Right?! Not fair!! 😉 we try so hard, though. I mean, I could be eating fast food and drinking whiskey and smoking cigarettes and popping pain pills…. But, no, veggies, herbal tea, baths and meditation – shouldn’t I be better by now!? ;p
      Hope you are feeling better by now and our heart has relaxed. Xo


  10. Jumping_Jenny_444 says:

    I have signed too. Hope you feel improved soon! Sending you blessings of healing and positive vibes.


  11. Jumping_Jenny_444 says:

    Reblogged this on My Fibrotastic Life!.


  12. Trisha says:

    Sorry to hear you are having a relapse. 😦 I hope you feel better soon.


  13. triciaruth says:

    Sending healing thoughts your way. Hang in there and you’ll come out the other side stronger.


  14. triciaruth says:

    Reblogged this on Get up. Dress up. Turn up. and commented:
    This is well worth a read and please sign the petition – it is scary to think that there is active pressure to move backwards away from finding a cure, or at least effective treatment, for this horrible disease.


  15. Jocelyn says:

    Hope you’re feeling better soonest, E.


  16. Reblogged this on Just Another F-bomb and commented:
    Take a few minutes to read and sign.


  17. Hi Elizabeth. Ugh, my stomach sank when I read the first sentence of your post. I am SO sorry. I myself fear the return of those original symptoms, and it feels like it could happen at any time.

    So interesting that you had/are having bad night sweats. That was one of my original symptoms too, but it went away after the original acute phase. I don’ think I’ve heard any other patients mention this before.

    It *could mean that your immune system is once again fighting back which can be good sign. Accordingly to Dr. Chia, it is anyway. I believe sweats happen when our bodies try to achieve homeostasis. Here’s hoping this leads to some improvements after the storm.

    Thanks for reblogging my post. Wow, your blog sure seems to get a lot of traffic 🙂


    • E. Milo says:

      Thanks, Patrick! My acupuncturist says the same thing– that I should think of fever and sweats as my body winning and the chills mean the virus is winning. But, man, I DESPISE the night sweats. Nothing makes me feel sicker. It isn’t just sweat – it’s sickness. Mine went away, too, for such a long time. They are definitely an indicator for me to slow down. Our stories are so similar, they amaze me. You’re right – I’ve not read many accounts of night sweats being a predominant symptom. So, we both swam in different water, got sick, got better, had a vaccination, and ME came down with evil night sweats….? Incredible. My guess is I am worse than you because my body wasn’t great to begin with – a few autoimmune conditions and syncope problems. And maybe I let myself succumb emotionally after becoming housebound, which compounded things. I love how you write so matter-of-factly. I trust your research and advice, so thanks for putting it out there! And I’m routing for you every step of the way (was so excited when you jumped on the surf board). Hope the new baby is wonderful. 🙂


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