PROMINENT ME/CFS ADVOCATES, INCLUDING SMCI PRESIDENT CAROL HEAD, TO MEET WITH SENIOR HHS OFFICIALS

LOS ANGELES, Thursday, July 28, 2016 – Solve ME/CFS Initiative (SMCI) President Carol Head and prominent ME/CFS advocates Jen Brea of #MEAction, Mary Dimmock, Jennie Spotila, and Terri Wilder will meet with Karen B. DeSalvo, M.D., M.P.H., M.Sc., acting assistant secretary for health (ASH) at the Department of Health and Human Services (HHS), this August.

The result of tenacious work conducted by a nationwide group of advocates led by Mary Dimmock, the August meeting will focus on securing additional research funding for ME/CFS, streamlining HHS interagency processes and making those processes public, and including experts, researchers, and patients in the development of new strategies to combat ME/CFS. The meeting will also address the need for comprehensive and accurate medical provider education, vetted by disease experts, and aim to make sure that ME/CFS retains its forward momentum within HHS during the transition to a new president.

Within the US government, the responsibility for protecting the health of all Americans falls to the HHS. It directly oversees nearly 25% of all federal discretionary spending and administers more grant dollars than all other federal agencies combined. The HHS directly oversees the NIH and the CDC, two federal agencies directly working on ME/CFS. A cabinet-level department, the HHS reports directly to the President of the United States.

About Solve ME/CFS Initiative (SMCI)

Solve ME/CFS Initiative (SMCI) was founded in 1987 and has established itself as the leading non-profit organization dedicated to ME/CFS. The organization’s mission is to make ME/CFS widely understood, diagnosable, and treatable by stimulating and conducting research aimed at the early detection, objective diagnosis, and effective treatment of ME/CFS. SMCI is the first and only ME/CFS organization to earn the highest possible distinction (a 4-star rating) from Charity Navigator, America’s largest independent charity evaluator.

July 28, 2016
  • Jill

    Thanks to all of you for doing this.

    I am aware I don’t have to tell you but feel I should still mention that we have to stop the HHS, CDC and NIH from recommending ANY type of exercise as a TREATMENT therapy for the DISEASE.

    We all know that a tiny percentage of patients that go into remittance can exercise carefully but that is few and far between and it is NOT a TREATMENT for the DISEASE but rather if a patient did remit they would gently exercise as part of a general well being course so they do not experience weight gain and this can help in staying off heart disease and diabetes. A patient can also relapse due to exercise.

    Doctors should be warned that embarking on an exercise program can have a severe negative impact on a ME/CFS patient and it should never be recommended for a treatment path for the disease. A patient diagnosed with ME, CFS, ME/CFS or CFS/ME who has “moderate” symptoms can be pushed into severe FROM exercise or by pushing themselves through life or by embarking on “programs” that are designed to keep them moving and busy.

    Again, thank you for your efforts.

  • Jill

    Also, the demand for not recommending exercise for treatment of the disease but also the informing of all US doctors not to recommend exercise so as not to do harm to the patient is non-negotiable. No more pussyfooting on this issue.

  • I tried exercising using that ‘push on through’ viewpoint and it nearly ruined my health. Im still on antibiotics and am slowly getting back to where I was.

    • Lisa Joe

      I am thinking HHS is going to “concede” on some no-brainer like studying LDN to calm the ME/CFS masses. But in no way can HHS, NIH or CDC be allowed to recommend exercise nor can they just take down information or stop speaking about it they have to tell US doctors to not recommend exercise or pushing through this disease because it causes harm to the patient and this MUST be stated at this meeting as a non-negotiable demand.

    • Jill

      I am thinking HHS is going to “concede” on some no-brainer like studying
      LDN to calm the ME/CFS masses. But in no way can HHS, NIH or CDC be
      allowed to recommend exercise nor can they just take down information on
      their sites or stop speaking about it they have to tell US doctors to
      not recommend exercise or pushing through this disease because it causes
      harm to the patient and this MUST be stated at this meeting as a
      non-negotiable demand.

  • katspan

    I have severe ME. Bed bound for 6 years now. I live in Mississippi and have never seen a doctor who would treat me for ME. We need to be aware that there are many areas where help of any kind is unavailable to even the sickest of patients. Because I can no longer bathe or leave the bed-I have no hope of ever finding help.

  • mary

    Awesome to see that action is starting to take place and the right people are talking. All of these advocates seem awesome and the perfect voices to represent this community that has needed an allie in the government for so long. I’d love to come represent too! In the meantime, I hope you all have all had a chance to see and/or sign this petition which asks HHS and NIH for way higher research funding (100 million) for ME/CFS. We are almost at 40,000 signatures and trying hard to get to 50,000. Please sign or share if you haven’t already, I know this can help us achieve the change we need. And adequate funding is a huge part of that change. Please sign. Just asking for names, not money, and takes 30 seconds. Anyone in the world can sign. Thank you!

    https://www.change.org/p/increase-research-funding-for-me-cfs

  • mary

    Here’s the link to sign the petition. Not sure if other one went through. Stay hopeful yall! 🙂

    https://www.change.org/p/increase-research-funding-for-me-cfs

  • Marcie Hi

    Marcie Hi
    August 2 at 2:04am ·

    I am grateful for the ME/CFS/CFIDS forum with HHS. And, in sincere hope answers may be found in such gatherings, I am offering some of my personal experiences, thoughts and possibilities for your/their future consideration.

    (1) When I became ill around 1990, ME/CFS/CFIDS was fairly new as far as I know. I was working in a large building and began having great difficulty with flu-like symptoms, debilitating aches, brain fog, exhaustion and depression. These symptoms are not always obvious to others, and my manager did not believe in my illness.

    But, I was blessed with a quiet, kind, and knowledgeable person’s referral to an excellent doctor with the necessary training and personal knowledge of CFIDS to determine this was the culprit. Thanks to him, I was finally properly diagnosed and approved for disability retirement.

    (Note: After my disability retirement, I learned a co-worker on my floor had quietly retired for the same illness, prior to me, … that’s at least 2 cases I know of in the same building, in a short period of time.)

    (2) I am offering the closed-air building idea as only one of many possible triggers or co-culprits of this and similar immune-dysfunction diseases.

    (a) This tall building where I worked, had a “closed air system” which recycled the same air throughout the building… no fresh air… except for very minimal fresh air on the 1st floor, when people entered or left the building. Years later, some “closed” air ducts were opened for repair, and significant mold was found. Thankfully, the office was moved to a new building and location.

    (b) Across the country, a sister building with the same structure, air system, and health issues had to be closed for several months, if not permanently.)

    (3) When considering one possible link between ME/CFS illness and closed air buildings, please include the following thoughts:

    (a) 1000+ employees sharing the same closed air system with all the germs of colds, flu, etc. floating/blowing around;

    (b) Many of the people who came to the office on the first floor filed for health-related disabilities; and;

    (c) I and all employees on my floor were screened on at least 2 separate occasions for TB (tuberculosis).

    I realize the above issues I have raised may or may not wind up having any proven link to our illness, but these ARE an enormous burden to anyone’s health… almost a “Perfect Storm” of an illness.

  • reaseAable .

    I began symptoms in the early 1990s with progressive deterioration in stamina. The Plethora of symptoms increased with time and age, having no clue that I was accelerating my damaged body by pushing to stay active. in mid-2000s I finally started seeing doctors and nurse practitioners …I had to insist that an EBV test at least be done because standard blood work was usually normal enough (because I eliminated as much GMO and nonorganic foods as I could and took moderate walking and toning exercise), fear of obesity and diabetes. I learned everything about my disease via the INTERNET and it probably saved my life, emotionally and physically. The area I lived in was void of a knowledgeable, humble doctor willing to take on the challenge of monitoring patients with genuine/severe CFS/ME symptoms. If one “recovered” most likely did not have it, but some nutritional deficiency and lack of physical fitness/lifestyle. If more Internal Medicine doctors and nurses and physician assistants would go to seminars and read newsletters, etc., and if only a certification for diagnosing this chronic condition, more people could be helped to manage. I was CPET tested two years ago and deemed severely impaired and still denied disability! when new directives said don’t deny these folks with objective findings! My third appeals hearing is in a few days….what can I do if denied again…I have exhausted property and money, homeless living with family….I cannot give up! Hope many others do not give up and expire while waiting for disability income…I was denied medical insurance in Alabama when I had to move from California…imagine that…cannot get it until I get disability income, oh the pain and humiliation for trying to do what is right.