ME Action – American ME and CFS Society

Protesters took to the pavement outside the White House on 19 September to demand a better deal for people affected by long covid, complaining that the Biden administration’s plans fell short on action and funding.

“The pandemic is over,” President Joe Biden declared the night before in a pre-recorded interview which aired on the news magazine 60 Minutes. “We still have a problem with covid,” he said. “We’re still doing a lot of work on it but the pandemic is over. If you notice, no one’s wearing masks. Everybody seems to be in pretty good shape. And, so, I think it’s changing.”

But the scene outside the presidential mansion the next day belied that message. Wearing black masks and red shirts, protesters called for research, medical treatment, and social services for those with long covid. Around half would qualify for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. The protest was organised by #MEAction, an international network of patient advocates.

“I went undiagnosed for 15 years, because doctors are not educated about the condition,” Jennifer Nish told The BMJ. Nish, from Lubbock, Texas, said that she was inspired to help organise the protest to raise awareness. “I don’t want anyone to go through what I had to go through,” she said and called on “the White House to treat this like the emergency that it is.”

Read the rest of this article HERE.

Source: Roehr B. Long covid: protesters outside the White House demand better care BMJ 2022; 378 :o2266 doi:10.1136/bmj.o2266 https://www.bmj.com/content/378/bmj.o2266 (Full text)

Comment on: Outcome in the chronic fatigue syndrome. [BMJ. 1992]

EDITOR,-I should like to assure Simon Wessely that neither the ME Association nor ME Action regards Michael Sharpe and colleagues’ findings in patients with chronic fatigue’ as another attack on its credibility. Nor do we see why the paper should “further sour relations between the organisations and the profession.”

As Wessely points out, the apparent relation between functional impairment and membership of a self help organisation at follow up does not mean that membership of such an organisation is responsible for the impairment. Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability.

As regards the potential damage resulting from inaccurate information about myalgic encephalomyelitis, it is worth emphasising that the quote that illustrates this came from Nursing Standard and not from a magazine for patients. The British organisations have long been unhappy with the way the media have portrayed the illness and reviewed existing research, and it is often extremely difficult to get erroneous or biased information corrected. Sometimes we get a right of reply, but usually we don’t.

Finally, I wish to make clear that our current advice on exercise and stress is based on sound scientific research, the recommendations of our medical advisers, and 50 years’ experience. Since our aim is to help patients it would be ridiculous for us to ignore good research and to stick instead to outdated explanations, speculation, or even prejudice. No one gains from such a narrow minded approach, least of all us.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/pdf/bmj00091-0063a.pdf

Source: Hume MC. Self help organization’s advice on myalgic encephalomyelitis. BMJ. 1992 Sep 12;305(6854):649. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/