Print

Posted in:

ME patients stage Bethesda protests

Protesters rallied outside the NIH campus in Bethesda MD, angry at the US government’s continued neglect and mistreatment of one million disabled Americans with ME (myalgic encephalomyelitis).

National Institutes of Health (NIH) officials were bunkered down in a special P2P meeting to plan the government’s ongoing response to patient concerns.

The protesters demanded the government adopt the Canadian Consensus Criteria (CCC) for ME, already well accepted and supported by researchers and clinicians, and the cancellation of the IOM (Institute of Medicine) contract to redefine ME.

Protest organizer Tom Jarrett, of Westfield, IN, was among those calling for a halt to the ME redefinition report being produced by NIH and the Department of Health and Human Services (HHS), which they think will set back their cause by decades.

Jarrett says that although he has lost his livelihood as a former estate and certified financial planner to ME, he has not lost his fighting spirit.

“NIH is not truly listening to what the patients say. Internal NIH emails obtained through a FOIA lawsuit stating ‘File all these responses. No need to answer them directly’ prove this claim,” he said.

“They have a pre-set agenda for this P2P workshop and the corresponding IOM redefinition effort, and they intend to carry it out regardless of what patients and their doctors say. We are here to protest these redefinition projects that waste taxpayer money and harm patients by moving research backward in time, away from neuro-immune biomarkers, and toward the generic symptom of fatigue.”

ME patients have formed a new advocacy body in response to NIH neglect. ME Advocacy already has established a fighting fund and has engaged a prominent public relations firm to further their cause.

“There is so much at stake here for my family and for the ME community,” Jarrett said. “Will the P2P meeting and resulting report result in decades more of neglect, while my sons grow up without a healthy father, and patients with ME suffer and die, saddled with a vague disease definition, a trivializing name, and no hope of a cure? I don’t think so, because we patients will keep fighting until the NIH stops and truly listens to our voices.”

For nearly 30 years, people with the debilitating disease, ME, often referred to in the US by the disparaging name of “chronic fatigue syndrome”, have suffered the ravages of a neuro-immune disease that has left many confined to their beds or homes in pain and dysfunction.

Since the reported outbreak of the disease in Incline Village, Nevada in the mid 1980s, the federal government has done little to support research into ME.

A scant 5 million dollars per year has been allocated for research into ME, a disease that affects more than one million Americans and which costs the country more than $17 billion annually in lost productivity and medical costs.

So little has been spent on educating physicians about the disease that fewer than 15% of doctors can explain what it is.

More

  • Christine Jarrett, Additional photos of “Stand-in, Lay Down” Protest at NIH Headquarters, Dec 10, 2014, Facebook [photos]
  • Christine Jarrett, Additional video clips of “Stand-in, Lay Down” Protest at NIH Headquarters, Dec 10, 2014, Youtube, youtube channel
  • ME Advocacy, Disabled Americans Protest US National Institutes of Health’s P2P Meeting, ME Advocacy website, Dec 9, 2014. [press release]

 

PHOTO: by Christine Jarrett. ME patients and families protest P2P at Bethesda (Terrific pic – RustyJ)

Shares

Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

86 posts

12 Comments

Leave a Reply
  1. Rusty, this is a great article and a great site! Thank you so much for covering the protest. I have to make one correction. Christine Jarrett took the photo. ~Erica Verrillo

    • Thanks Erica, however I must admit much of the hard work was done by the people at ME Advocacy in putting a press release together. I’m embarrassed to say my effort is mostly a chop and paste. It takes a lot of energy to put an original story together, as you probably know, and I really struggle, lol. Re photo, I will add attribute. I wouldn’t mind a larger pic though, if it’s possible to arrange, to … I was pushing it with the copy off Twitter, though most wouldn’t pick up that it is slightly degraded.

  2. Great Article, Thanks for the support to the community. Is time for this Governmental charade to stop.

  3. I want to thank everybody involved in this great initiative from the bottom of my heart. Tom and his family and friends. They traveled a long distance and I know this has been really hard on Tom. The folks from ME Advocacy who are sick themselves and doing the media work has not been a small feat for them. The protesters who joined in spontaneously. And Rusty, thank you very much for covering this.

    The pictures of disabled patients unable to attend is such a great idea (and I know others had it in the past). This can become our AIDS quilt.

    Thank you again, everybody. This is effective activism.

    • I was a little overwhelmed following this exercise, knowing the effort and organization that must have gone into it. I couldn’t say so in the article because of its style, but I hold all in awe, even down to those who allowed their photos to be used in the protest. The shot of Tom’s son 🙂 holding the placard was very moving and captured how this illness has swallowed up families. Yet there they were in the freezing cold, for their dads, for all of us. I am embarrassed I couldn’t be there.

      So thank you all. And thanks again for your amazing work, Jeannette.

  4. thank you so very very much for holding the protest and for publicizing it here on this excellent website.

    • Hey there rivka, I understand you had a bit to do with this, thanks. Came across your document on how to run a protest the other day – very nice work. Stay strong.

  5. I saw all of the tweets and facebook postings of this while the P2P was in progress–I have to say I was in awe in what you all were able to pull off in such a short period of time. You’re iniative is VERY MUCH appreciated!!!! Thank You!!

Leave a Reply

Your email address will not be published.