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Legal win for ME patient in the US

ME sufferer Jeanette Burmeister has won a significant legal stoush with two government agencies over their failure to respond adequately to her request last year for information under the Freedom of Information Act (FOIA).

The US District Court for the Northern District of California ruled that the Depts of Health and Human Services (HHS) and National Institutes of Health (NIH) violated the FOIA when they improperly withheld documents from her in response to her FOIA request.

“I believe that holding HHS and NIH legally responsible for their violation of federal law is a tremendous victory for our patient population…”

Ms Burmeister is investigating a contract the HHS has with the Institute of Medicine (IOM) for the study of the diagnostic criteria for ME/CFS, the illness she suffers from.

In her blog Thoughts About M.E. Ms Burmeister said: “The Court granted my motion for summary judgment and ordered the government ‘to produce, within 60 days, all documents responsive to [my] request that are not covered by any exemption to FOIA’s disclosure requirements.’

“It was apparent that the government’s search for responsive documents was woefully inadequate, as obviously existing documents covered by my request that would have been easily available to the government and that a reasonable document search would have uncovered were not provided,” said Ms Burmeister.

“The Court agreed and held that the search was the result of ‘obviously an unreasonably narrow interpretation of Burmeister’s request.'”

Patients ridiculed and abused

Myalgic encephalomyelitis (ME/CFS) is a severe illness characterized by neurological and immune dysfunction that affects as many as one million in the US alone, yet it is mostly ignored by US health authorities.

Ms Burmeister is a prominent advocate for more funding and better treatments for the disease.

“I believe that holding HHS and NIH legally responsible for their violation of federal law is a tremendous victory for our patient population,” she said.

When Ms Burmeister filed her lawsuit against the HHS and NIH back in January this year she accused federal administrators of playing a “secrecy game”.

“Patients with this disease have been harmed, dismissed, ridiculed, abused, neglected and completely abandoned by the government, and as a result, by the medical profession, insurance companies, friends, family, neighbors, colleagues; in other words, by society at large,” blogged Ms Burmeister at the time.

“This is largely due to the unscientific government-sponsored case definitions, another one of which was ordered from the IOM, which is the issue at the heart of my FOIA request.

“In light of this crucial reality, it simply boggles the mind that the government would arrogantly ignore their duties under the FOIA,” she said.

“The IOM ‘study’ is a highly contentious issue and the secrecy game the government is playing at the expense of violating federal law leads many to believe that the government has something to hide. It certainly isn’t worried about giving that impression.”

International experts oppose the IOM study

Researchers, clinicians and patients have openly opposed the IOM contract to rewrite the diagnostic criteria for me/cfs.

Late last year as many as 50 me/cfs international experts and 171 patient advocates supported a series of open letters to Kathleen Sebelius, U.S. Secretary of Health and Human Services, which stated: “…we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop ‘clinical diagnostic criteria’ for ME/CFS.”

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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.

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  1. Thank you Rusty for this article. Jeanette is our true champion. She is using her immense skills at a cost to her own health in order to fight for our rights. Thank you, Jeanette.

  2. Bravo! Sick for at least 14 years. Feeling like an abandoned dog. Not surprised by the secrecy. We all know there has to be answers we are not getting purposely. This just proves it. Thank you!!!!

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