This week I learned about ME/CFS

12 Nov

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 Nature Reviews Genetics paper?” His reply came quick: “Sure, paper attached. We are not well. One of my daughters is very sick.”

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.

Let me repeat that. This 18-year old girl is bedridden in a dark room for 24 hours a day.

When I last saw Joachim’s family in 2017 in Berkeley, she and her twin sister were healthy teenagers adjusting to school abroad.

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.

It’s thought that
worldwide
20 million people have ME/CFS

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.

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

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”.

The funding situation for ME/CFS in Europe is probably worse, but nobody has the numbers.

If researchers have no money to work on this disease, no wonder that there is no diagnostic test and no FDA-approved medication.

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.

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

After reading just a few things about ME/CFS I could see how difficult it must be to live with (or see a loved one live with) such a crippling disease that’s not even taken seriously by medical schools or funding agencies. So 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:

4 things you can do to support people with ME/CFS

  1. 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’’).
  2. 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
  3. Third, you can donate money for research here: https://solvecfs.org/about-the-disease/ or here https://www.omf.ngo/what-is-mecfs/.
  4. Finally, please share this information so that more people will know about ME/CFS. 

Thanks for reading this thread / blogpost!

Note: I am sharing this story with Joachim’s permission.

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