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Unfortunately in some ways it IS competition. THREAD (1/10) https://twitter.com/dr2nisreenalwan/status/1325515300595507201">https://twitter.com/dr2nisree...
The public has a limited attention span. Despite events like @unrestfilm and the National Academy of Med report, the public does not recognize #MECFS as a public health problem despite the fact that an estimated 1 million people have it. (2/10)
#LongCovid is getting a lot of press attention, which is GREAT, but most journalists and experts are not also discussing the multiple obvious parallels with #MECFS. @edyong209 is a notable exception: https://www.google.com/amp/s/amp.theatlantic.com/amp/article/615382/">https://www.google.com/amp/s/amp... (3/10)
Obviously there is substantial competition for scientific resources. Last week NIH confirmed that their in-house study of #MECFS patients (which was already running behind schedule) has been paused since February. No re-start date set as far as I know. (4/10)
Competition for funding is a huge issue, of course. #MECFS causes an economic loss in the US of $30billion or more (incl lost productivity). The highest single year of NIH funding to extramural projects was in 2017: $13.3 Million http://occupyme.net/2017/10/03/bottom-of-the-ramp/">https://occupyme.net/2017/10/0... (5/10)
Yes. That number is correct. $13 Million was the HIGHEST in a single year, for a disease that affects 1 million people and disables at least 25% of them. That high point in funding was in 2017 and has fallen since then. http://occupyme.net/2020/11/06/nih-funding-for-me-in-2020-falling-flat/">https://occupyme.net/2020/11/0... (6/10)
And NIH knows the urgency of the situation. I mentioned the 2015 NAM report, which NIH partially funded. In Oct 2015, Dr. Francis Collins said that NIH was going to reinvigorate and ramp up #MECFS funding. It was more like a bump up to 2017 and then flat. (7/10)
There is a reasonable desire among #LongCovid patients to avoid being lumped together with #MECFS patients, given the gaslighting, harmful practices claimed as “treatments,” and the lack of funding. And we don’t want to be left behind if the funding flows to #LongCovid (8/10)
Yet #MECFS patients do not begrudge #LongCovid any attention they are receiving. In fact, @MEActNet has done an OUTSTANDING job offering our collective expertise to #longhaulers in the hope of easing their suffering. https://www.meaction.net/long-covid-me-understanding-the-connection/">https://www.meaction.net/long-covi... (9/10)
Rather than admonishing #MECFS or other patients for speaking up about our experiences, it would be more productive to join and amplify our voices. We want what every sick person wants and deserves: compassionate and effective treatment. (10/10)
