Dr David Tuller:Game-Changing Articles in the New York Times and The Guardian

Countrygirl

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David discusses the two brilliant articles one in The Guardian and the other in The New York Times, that have been published on the last few days. Surely these are the best two newspaper accounts on ME ever!


https://www.virology.ws/2021/01/24/...J82s2SxnozYwExBQZFopd-0iIEQOj817edgFYxVu59m4Y

Trial By Error: Game-Changing Articles in The Guardian and The New York Times

24 JANUARY 2021
By David Tuller, DrPH
The relationship between what is being called long-Covid and ME/CFS (and its variants) is complex. The conditions overlap in ways that are poorly understood, and the mechanisms through which they produce such significant disabilities remain elusive. As the coronavirus pandemic enters its second year, many tens or hundreds of thousands of people around the world are suffering from long-term medical symptoms after an acute bout of Covid-19. It remains to be seen how long their complaints will persist.

From the start, It was clear to everyone in the ME/CFS community—patients, advocates, clinicians, investigators–that some proportion of Covid-19 patients would likely experience a subsequent period of prolonged illness. It was also clear that this secondary wave of post-viral complications would have serious but unknown implications for ME/CFS. (I wrote about this possibility here, here and here.) Many hoped, as I did, that the long-covid phenomenon would bring much-needed attention to ME/CFS itself, as well as greater awareness of the pervasive neglect and dismissiveness to which these patients had been subjected for decades.
Well, that’s happened! ME/CFS officially became Big News on both sides of the Atlantic on the same day–Thursday, January 21. (The first full day of a non-Trump presidency—what a lovely coincidence!) Finally, two smart journalists who have not previously focused on ME/CFS have done what many of their colleagues haven’t. They have connected with–and listened to!–key sources. They have ignored the propaganda emanating from the committed proponents of psycho-behavioral treatments like graded exercise therapy and cognitive behavior therapy.
As a result, both of them–Moises Velasquez-Manoff, a New York Times contributor who writes about medicine, and George Monbiot, a well-known columnist for The Guardian–have produced compelling and well-written pieces that fairly and sympathetically represent the plight of ME/CFS patients.
 

Hip

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Here is the excellent Guardian article by George Monbiot (free to view):

We're about to see a wave of long Covid. When will ministers take it seriously?

Some excerpts:
A study published in the journal Plos One found that, of the 20 conditions it assessed, including lung cancer, stroke, MS and schizophrenia, patients with ME/CFS reported the lowest health-related quality of life.
ME/CFS has been disgracefully neglected by science and medicine.

A paper published in the British Medical Journal in 1970, and widely reported in the press, set the tone for scientific inquiry across much of the following 50 years. It dismissed outbreaks of the disease as either “mass hysteria” or misdiagnosis.

The researchers failed to assess a single patient or interview a single doctor. Their conclusions were largely based on one observation: that the syndrome affected more women than men. Therefore, they reasoned, it was likely to be psychosomatic.

In other words, this wasn’t science but misogyny. In the 1990s, the condition was characterised by some doctors as a “belief” and a “pseudo-disease”.
For some sufferers, the condition is a “living death”. The testimony of people who have written to me is heartbreaking. “Ill for over 15 years now and have lost marriage, career, friends.” “Ended up bedridden age 22 and have been tube-fed with care from 2004 until present day.”