This type of crowdsourcing is intriguing and I know Glenn here has attempted to do some himself. I am curious if anyone is familiar with this organization and if participating in their data collection might be fruitful.
Interesting. SolveME is one of the larger ME advocacy organizations out there. (Personally I’m not a fan of advocacy organizations in general… many of them waste money and have their own political bent which gets in the way of healing people. Like when they tell ME/CFS and Long COVID to get the COVID vaccine and then it turns out that many get badly hurt by them.)
There’s a CURE ID research project going on which aims to collect treatment outcomes data from Long COVID patients. Solve ME is one the poster for it at the bottom left.
Unfortunately the CURE ID survey design is not as great as it can be… whoever put it together is inexperienced. Which is fine I guess because everybody has to start somewhere. Hopefully something good comes out of that research project.
The biggest problem that they will run into is that patients report a lot of unreliable data… that’s clear from my previous survey projects. It takes some work to try to reduce that.
I think right now many of the orgs on that poster don’t really want to recognize vaccine injury. MEAction was sort of on the fence and may be the closest to being ok with recognizing harm from the COVID vaccines. The letter agencies CDC and FDA know about vaccine injury, studied it, and buried the results. They are the worst. See the threads here about Avindra Nath.
I am 77 years young. I became ill after a flu in 1986. All tests were good so I was sent to a psychiatrist. In 1989 an Infectious disease doctor diagnosed me with CFS. I have followed solvecfs.org for a very long time. The name has changed a few times, as has some of the people in charge. They have received grants and donations and use to send out information. But I rarely heard of any big discoveries or treatments. It’s like when I was young and saw Jerry Lewis doing his telethon for Muscular Dystrophy and raised lots of money, but as far as I know, there is still no cure. I was slowly getting better from CFS over the years by simply taking care of myself and that wasn’t easy with four kids. The covid vaccine has set me way back. I can’t afford to spend money on all the treatments suggested. I still follow now, me/cfs but not a lot of faith in a cure. The fact that it’s link to FDA and CDC gives me less hope. but I’m old and a pessimist.
Yeah unfortunately a lot of ME/CFS groups pushed the vaccine even though there was data from ANZMES and a UK MECFS organization showing that a portion of people were reacting badly to it. Data in this video.
John Chia did have success in treating his son, who works fulltime now. I made a post here about him. Ironically his son works for Gilead / big pharma.
I recovered and spend like less than $2K or something. Almost everything in the what worked for LC/vax injury video is cheap.
