The NIH responds to #MEAction, Next Steps

Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting with #MEAction. We also asked for your help to reach out to Collins and put pressure on the NIH to respond to our demands. Your hard work paid off.
Now, we want to share that we received a response from the NIH. The date listed on the letter is June 25th, but we received it in July. We have taken our time to read it over, gather our thoughts, and formulate the best way to approach our next steps. You can read the full letter here.
We are still demanding a meeting with Francis Collins to push him to concrete action. We are waiting to hear from Francis Collins on when he will be meeting with us. We will keep you updated with any further development.

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14 thoughts on “The NIH responds to #MEAction, Next Steps”

  1. Can we make it clear to the NIH that all of the center’s they’ve set up completely ignore the Midwest? We can’t get to the coast sometimes because we’re in the middle of the country, where there is little to nothing for us to count on as far as Medical Care.

  2. Can we make it clear to the NIH that all of the center’s they’ve set up completely ignore the Midwest? We can’t get to the coast sometimes because we’re in the middle of the country, where there is little to nothing for us to count on as far as Medical Care.

  3. I agree with Sue, I live in Minnesota, where the infamous Mayo clinic resides. They treat CFS patients like psych patients. I have had this horrid disease for 29 years, and not once have I found a Doctor that has any useful knowledge on how to treat me. They have done NOTHING, or worse, they have made my condition worse many, many times. I do not even see doctors anymore, cuz it is just adding insult to injury.

  4. I agree with Sue, I live in Minnesota, where the infamous Mayo clinic resides. They treat CFS patients like psych patients. I have had this horrid disease for 29 years, and not once have I found a Doctor that has any useful knowledge on how to treat me. They have done NOTHING, or worse, they have made my condition worse many, many times. I do not even see doctors anymore, cuz it is just adding insult to injury.

  5. I appreciate this article is about the correspondence with NIH, but may I ask do you intend to make any comments on the new information on ‘ME/CFS’ that the CDC have put up on their website for healthcare professionals? I was surprised to see nothing from you. I think parts of the treatment section on the CDC website is alarming. Initially it reads like progress when it acknowledges people with ME can not tolerate exercise, especially aerobic activity, and for many even standard activities of daily living. It rightly advises people with ‘ME/CFS’ need to keep within their limits and exercise is not a cure. However, it then contradicts this information by proceeding to say ‘TOLERANCE OF AEROBIC EXERCISE AND NORMAL LEVELS OF ACTIVITY IS ALSO A LONG-TERM GOAL. It also writes in this section, “Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning”.
    I am deeply concerned that once again it slips in the message that eventually normal levels of activity, including aerobic activity (read normal functioning) can be achieved purely by initial pacing followed by gradual increase of activity levels. Patients know this is not true. The development of effective biomedical treatment is the only thing that will achieve that.

  6. I appreciate this article is about the correspondence with NIH, but may I ask do you intend to make any comments on the new information on ‘ME/CFS’ that the CDC have put up on their website for healthcare professionals? I was surprised to see nothing from you. I think parts of the treatment section on the CDC website is alarming. Initially it reads like progress when it acknowledges people with ME can not tolerate exercise, especially aerobic activity, and for many even standard activities of daily living. It rightly advises people with ‘ME/CFS’ need to keep within their limits and exercise is not a cure. However, it then contradicts this information by proceeding to say ‘TOLERANCE OF AEROBIC EXERCISE AND NORMAL LEVELS OF ACTIVITY IS ALSO A LONG-TERM GOAL. It also writes in this section, “Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning”.
    I am deeply concerned that once again it slips in the message that eventually normal levels of activity, including aerobic activity (read normal functioning) can be achieved purely by initial pacing followed by gradual increase of activity levels. Patients know this is not true. The development of effective biomedical treatment is the only thing that will achieve that.

  7. I have had this disease for 29 years. The last 5 years has been nothing but serving. I have am a wife, mother of 3 boys and a grandmother of 10. I have had a daycare busines, helped my husband with his business, and babysat 2 of my grandkids till I got seriously ill with CFSME 5 years ago. I had to start slowing down and not doing so much. I saw myself as lazy and week. My kids saw me as that way to. My husband and I went to Doctor after Doctor, test after test and same thing, your fine your blood is fine just a little white blood count high but everything with in normal limits! I would tell them my lymph nodes hurt bad from waist on up to neck. But your fine they would say just exercise. I can’t even draw enough air to talk let alone exercise. Oh! But I’m fine, I’m healthy. My last Doctor said. I went to a different one last time, finally he is sending me for test. Maybe I will get some where! Because now I am bedridden, I can barely talk, and in pain, and other doctors say I have of CFSME, FM, Epstein Barr Virus, Arthritis, Polyarthralgia, Osteoarthritis.

  8. I have had this disease for 29 years. The last 5 years has been nothing but serving. I have am a wife, mother of 3 boys and a grandmother of 10. I have had a daycare busines, helped my husband with his business, and babysat 2 of my grandkids till I got seriously ill with CFSME 5 years ago. I had to start slowing down and not doing so much. I saw myself as lazy and week. My kids saw me as that way to. My husband and I went to Doctor after Doctor, test after test and same thing, your fine your blood is fine just a little white blood count high but everything with in normal limits! I would tell them my lymph nodes hurt bad from waist on up to neck. But your fine they would say just exercise. I can’t even draw enough air to talk let alone exercise. Oh! But I’m fine, I’m healthy. My last Doctor said. I went to a different one last time, finally he is sending me for test. Maybe I will get some where! Because now I am bedridden, I can barely talk, and in pain, and other doctors say I have of CFSME, FM, Epstein Barr Virus, Arthritis, Polyarthralgia, Osteoarthritis.

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