American Society for Biochemistry and Molecular Biology article on ME

Webdog

Webdog

Senior Member (Voting Rights)
Well written exhaustive article about ME/CFS, lack of funding, politics, advocacy and current research. Includes an excellent chronology of ME/CFS since 1934.

http://www.asbmb.org/asbmbtoday/201803/Feature/ME/
ADBMB Today said:
Myalgic Encephalomyeltis: Unknown cause. No cure. New hope.
By Lily Williams

Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings.

Lizzie excels in reading and math. She spends time crafting and watches science shows with her parents at night. But it’s hard for her to make it downstairs to the TV room. She can’t go to school. In fact, she might only leave her house once a week.
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ADBMB Today said:
Patients with ME have reported lower quality-of-life scores than patients with terminal cancer and heart disease.

Yet federal funding for ME research remains at a fraction of what is spent on each of these. In fact, research funding for ME remains less than what the government spends on headaches or hay fever. Multiple sclerosis funding is 12 times the funding for ME, but an estimated 400,000 patients in the U.S. have MS, fewer than half the number who have ME even according to the most conservative estimate.
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I skimmed through looking for references to PACE criticism, found it and left happy. Will read properly tomorrow. Thanks for the link.

David Tuller's work listed as a 'key moment' in ME history.

Then the next one was the re-analysis of PACE data.

Couldn't agree more.
 
Hey folks - lets show the journalist Lily Williams that wrote the article some love and comment on her article so she's inspired and directed by her editor to cover more ME. And share widely.

Here is the comment I left for her:

Thank you! Finally an article that exposes the iatrogenic harm the health care system perpetuates on people living with ME. In the very near future, there will be mass awareness of the gross negligence by our governments and failure of successive health leaders to stop the institutional bias that impedes equitable ME research funding and prevents access to health care. This article is another sign, and effort, to let the world know how the health care system sustains its marginalization and denigration of people living with ME. I look forward to you covering an apology from leaders for the decades of harm done to people with ME. Thank you for being part of making that change come to fruition.
 
Thanks for flagging it. I had talked to her a few months ago. She seemed like a smart young woman. She came into this reporting really knowing very little about the issue, so she's done a terrific job. by all means, shower the article with positive comments!!
 
"1990: The CDC receives more than 2,000 calls per month from the public requesting information about a flu that never goes away"

- How do you make it go away? asked a CDC authority to another.
- Well, we just called it chronic fatigue, that should do it.

All joke aside, there is always some new aggravating detail I learn on our ugly past in articles like this one, and these 2000 calls per month - many of which I assume were calls for help - left of course with no response, no action, is the latest one. It makes it harder still to believe the CDC had no clue there was a nasty illness out there. Aggravating.

Fantastic article
 
dave30th said:
Well, and the 2016 highlight was really Alem Matthees' victory at the First-Tier Tribunal, which of course was what led to the reanalyses that she does highlight.
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Do you think you'll get the chance to see Alem during your trip @dave30th? If you do, and if it is feasible, it would be great to pass on the gratitude of ... well, everyone who has ME, or is family/friends of. He's definitely one of the greats.
 
I've been in touch with Lily, the author of the article, and, dependent on full credit being given and a link back to the original article being in place, it is possible for this article to be republished. So does anybody have any suggestions of where she might approach or, ideally, any contacts in the media to help with this? Post below or PM me and I'll pass the info on.
 
Andy said:
I've been in touch with Lily, the author of the article, and, dependent on full credit being given and a link back to the original article being in place, it is possible for this article to be republished. So does anybody have any suggestions of where she might approach or, ideally, any contacts in the media to help with this? Post below or PM me and I'll pass the info on.
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@Russell Fleming @Emily Taylor could you offer Lily any help in getting her article further distribution?
 
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