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This week I learned about ME/CFS when I sent a 2-line email to my PhD advisor Joachim Hermisson. Me: “Hope you & your family are well. Could you send me your recent NatRevGen paper?” His reply: “Sure, paper attached. We are not well. One of my daughters is very sick.” 1/n https://twitter.com/pleunipennings/status/1326802221951037446
In a few more back and forth emails, I learned that his daughter has very severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). She is so sick that she is in bed in a dark room 24hours a day. She is a teenager.2/n
Let me repeat that. This 18-year old girl is bedridden in a dark room for 24 hours a day. 3/n
When I last saw Joachim’s family in 2017 in Berkeley, she and her twin sister were healthy teenagers adjusting to school abroad. 4/n
It is thought that 20 million people worldwide have ME/CFS. It’s a chronic disease and there is no cure. Symptoms include extreme fatigue, post-exertional malaise (which means doing anything makes you more tired), severe headaches and light and sound sensitivity. 5/n
Okay, you may think. Many diseases are bad. It’s always horrible when a young person gets so sick. But hey, we can’t do much about it. 6/n
But here’s the thing. According to CDC, this disease, while not exactly rare (probably 2 million people in the US and 2 million in Europe have it), is not even taught in most medical schools. https://www.cdc.gov/me-cfs/about/index.html 7/n
Also, ME/CFS gets almost no funding! This chart shows that almost all diseases get more research money than ME/CFS, despite its enormous impact in terms of lost “disability-adjusted life years”. 8/n https://twitter.com/brianvastag/status/667879507571806208
The funding situation for ME/CFS in Europe is probably worse, but nobody has the numbers. 9/n
If researchers have no money to work on this disease, no wonder that there is no diagnostic test and no FDA-approved medication. 10/n
Plus, ME/CFS is likely to get much more common with every COVID-19 wave because it is often triggered by a viral infection. Here is an article about the link between Covid-19 and ME/CFS. 11/n
Wait, this is the link: https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html 12/n
I asked Joachim "Is there anything I can do?" His answer was "Being informed is most important." Later he added: "People can donate money or sign the EU petition". Here's a short list of action items: 13/n
First, you can read about ME/CFS. This interview has a lot of info and also tells the story of an impressive young woman (Evelien van den Brink) who petitioned the EU to spend more on ME/CFS research. https://europeanmecoalition.com/wp-content/uploads/2020/11/Interview-Vriendin-English-translation-October-2020.pdf
Here you can see or read the speech Evelien van den Brink gave in the EU parliament https://europeanmecoalition.com/speech/ (her speech starts at 2’10’’). 15/n
Second, if you are an EU citizen, you can sign this petition to ask the EU to spend more money on ME/CFS research. https://www.europarl.europa.eu/petitions/en/petition/content/0204%252F2019/html/Petition-No-0204%252F2019-by-Evelien-Van-Den-Brink-%2528Dutch%2529-on-a-request-for-funding-for-biomedical-research-on-Myalgic-Encephalomyelitis 16/n
Third, you can donate money for research here: https://solvecfs.org/about-the-disease/ or here https://www.omf.ngo/what-is-mecfs/ . 17/n
Finally, please share this information so that more people will know about ME/CFS. 18/n
Thanks for reading this thread! 19/end
