Thursday, February 7, 2013

Myalgic Encephalomyelitis ("cfs") Patient Continues Hunger Strike


To: kathleen.sebelius@hhs.gov, margaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov, sandra.kweder@fda.hhs.gov, howard.koh@hhs.gov, ash@hhs.gov, 511bobmiller42@gmail.com

cc: Senator Diane Feinstein, Senator Barbara Boxer, Representative Mike Thompson

Long-time ME/cfs patient Robert Miller from Reno, Nevada began a hunger strike on January 29th.

Already severely ill, he is undergoing this painful and debilitating protest to call attention to the shocking neglect by government health agencies of millions of people suffering disabling pain with this disease.

Robert Miller, ME activist on hunger strike.

Miller began his hunger strike in advance of a recent FDA decision to disapprove a medication, Ampligen, that could salvage countless lives, allowing a return to productivity for people currently totally disabled. The strike extends beyond the fight for Ampligen approval, however, and encompasses the international issue of neglect and harm to ME patients.

Is it really necessary to shame into action, agencies pledged to address public health issues? Sadly, yes. Here in the US, our Centers for Disease Control and NIH have not only neglected but actively harmed M.E. patients since the 1980s:

- millions of dollars earmarked for ME were diverted and misspent.
- the disease was given the denigrating name "cfs" and patients were mocked in internal memos.

- the disease was relegated to the ghetto of Women's Health although it effects millions of men, women and children, causing pain and disability comparable to that in terminal cancer or late stage AIDS.
- government websites published misinformation including treatments that were not only useless but harmful to ME patients.
- ME patients continue to receive neglectful or harmful treatments and lower levels of funding and support than similar or less-severe illnesses.
- ME researchers have been discouraged and even hounded away from their studies in an academic and scientific atmosphere belittling and defaming their efforts.
- all this neglect and mismanagement has occurred in spite of strong evidence that the disease is communicable.

In the US and elsewhere, ME patients have been forcibly institutionalized, including young sufferers taken from their parents, and subjected to mistreatment regimens that have resulted in their more severe illness and even death.

The very identity of the disease or diseases encompassed in a diagnosis of "cfs" or ME is in question, due to the paucity of designated funding and the poor spending of what research dollars are allocated, often on inappropriately designed studies. A diagnosis of "cfs" may as easily fall upon a patient infected with Lyme disease, or suffering from Gulf War Illness, Fibromyalgia or a range of underfunded, understudied and therefore ill-defined Neurological, Endocrine and Immune Disorders.

Sufficient appropriate studies simply haven't been undertaken to even identify the entity or entities wreaking havoc in millions of lives and causing uncounted deaths. We die of heart disease, cancers, leukemia and suicide twenty years younger than average and the cause of our death is usually misreported, going unlinked to the root illness.

Shame on our health agencies. Their ignoring of this illness allows it to spread farther and ruin more lives daily. This horror must be stopped.

Robert Miller elicited a promise for action from President Obama. We are waiting...


We demand that you take this disease as seriously as it takes our lives. Robert Miller is suffering terribly, today, to bring public attention to - and outcry against - decades of suffering by millions of patients.

Sincerely,
Kathleen Fatooh

 Additional actions:

- please write a note of your own, long or short, to the agencies in the TO section above and your own representative
- tweet about this and retweet Robert's wife, CourtneyA999
- share this and other notes, videos, statuses and updates on Robert Miller's hunger strike
- join this Facebook "event" to support his effort and check in for updates and further actions feel free to - -
- copy/paste and send as your own, copy it to media people, share, distribute widely - I am SO SICK after the effort of writing this, it's all I can do for now, so I totally get it if you can't write one of your own but please do share. Thanks!

3 comments:

  1. Please see, and share, the Press Release found here: http://cfs-facts.blogspot.com/2013/02/press-release-bob-miller-ampligen.html

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  2. I myself suffer fron fibromyalgia but thought I w as dying or going crazy. I do everything my dr. Said vitamins diet change tai-chi etc. But I started going downhill and with taljing to others much research and a chance meeting with a former dr who now lives out of state (he said M.E ) and everything else I kbow its true but I cannot find help. My heart isn't doing well im beyond exhausted aand live with excruciating pain.can anyone help me before it's too late? Debbi Filori Burrous

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  3. Inflicting self-harm for attention is not good advocacy, and seems rather psychotic to me. Why do patients support nonsense like this?

    ReplyDelete