Well-known, famous people with ME/CFS (public thread)


Chris Williamson, some sort of famous YouTuber. Thinks it’s Lyme, parasite, coinfections, mold.

I saw that yesterday. I watched the whole video, because I thought it was interesting on many different levels.

His reach on the Internet is massive. Not only because of his audience, but also because of his relationships to other podcasters with huge audiences.

First of all, I really hope he gets well soon. Despite having seen and heard a lot of similar stories, it is still heart-wrenching to watch someone go through all these phases of feeling horrible, loosing mental capacity, being confused about what is happening, trying to figure it out and trying all the crazy therapies, trying to fight through, but nothing works, slowly coming to the realization that this may be the new normal. The film shows this quite well. And he did a good job of expressing what his problems are and how this affects everyday life.

And man, this concept of exercising to get better is so deeply rooted in society and especially in the self improvement online industry. He seems to work out a lot despite his problems and no one seems to suggest that it might be an option to not do it.

What was also striking, were the two, let‘s say, health experts, in the video. They seem to be the typical health experts of the podcast world. More interested in self promoting, than in helping, and so damn sure about what Chris problems are and what to do about it. I really thougt that Chris will be fine at the end of the video, just because I thought no one would sit there so confidently telling everyone that they know what is wrong and what to do, but the result being that Chris gets worse over time. I should know better, but this massive confidence despite having no clue always rattles me. Maybe I am unfair and misunderstood things, but that is how it came across to me.

What also bugs me is that all is set up to be told as a superhero story, if and when Chris gets better. You can be sure that in this case it all will be good because of our heroes‘ determination to fight and his resilience. And as a consequence of that, cementing the public opinion that those who don‘t recover are just lacking that determination and resilience. David Goggins will be cited, Andrew Huberman will be interviewed and recommending some weired hack involving looking in the sky while running in circles and drinking athletic greens, and Gabor Mate will detect a trauma that is the root of all the problems.

I really wish Chris all the best. But for ME/CFS I am sceptical that this will bring some positive public awareness.

And of course it must be said that we do not know what he really has, although everyone here can tell a somewhat similar story
 
Holy cow that beginning was painful “health experts” talking complete baloney. I’d say being so entrenched in the health podcast world and having money actually probably set him back.

This is exactly what my guys my age (late 20s mid 30s) think “health” is. That if you have an autoimmune condition you can just take enough supplements and listen to enough joe Rogan and red light to get out of it. I cannot begin to tell you how many of my friends think this is the way, it’s ridiculous. This will actually help me so I can show them even if you throw the influencer kitchen sink at it it’s not going to fix anything.
 
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Crikey, that's had three-quarters of a million views in one day.
I’ve never heard of this person and I haven’t watched the video. It would be nice to think that someone with his profile would use his influence to raise money and/or advocate for high quality research but history, and the posts above, suggests that he may be more likely to promote unevidenced treatments.

Like everybody, I wish him well and sincerely hope his health improves. I just hope he get doesn’t acquire Paul Garner Syndrome.
 
Matt McGorry has now been diagnosed with ME/CFS I guess. I've posted his tweets on the "well-known LC people" thread. He has the ear of Rob Wust who is following him.

"Curious if any of the Long CVD and/or ME/CFS gang has ever gotten a muscle biopsy to test mitochondrial function or autonomic testing or know much about the value of them?

Have an opportunity to do this but it’s a good bit of a lift traveling out of state, recovery from biopsy",
 
"I unfortunately agree. Unless there’s a specific reason to test for a genetic mito disease, any standard pathology lab can not say for certain whether a muscle biopsy is pathological. LC or ME are not primary myopathies, and there are no diagnoses based on biopsies (yet)".
 

Chris Williamson, some sort of famous YouTuber. Thinks it’s Lyme, parasite, coinfections, mold.

I have to say his narrative at 19:00m hit especially hard, I heavily related with ME stripping away what I objectively thought was me.

It’s sad that he dances around ME/CFS, one “health experts” brings it up at the end but frames it as a collection of lyme, viruses, mold etc…. My personal opinion watching it is he has not accepted ME/CFS. That he’s still looking for something some doctor missed that’s driving this all, I did the same just with less money and treatments. I know it took me longer than 2 years to finally concede to ME/CFS as well so I understand. I hope he finds some real treatment, pacing guidelines, and is able to accept. Hell some days I still struggle with acceptance and it’s been 5 years.
 
More than 40 years for me – my entire adulthood – and I still struggle with it every day, especially as I am now too old to have any real chance of a half decent life, even if a perfect cure became available tomorrow. There is just no way back from such an extreme degree of loss, abuse, and trauma.

Not helped by how ruthless and callous and widespread the resistance within the medical profession still is to actually doing their fucking job properly.
 
I'm almost nine years since onset, five years since I became severe and almost 16 years since I developed what I think was a prodromal form.

I got a lot worse because I couldn’t accept that I had MECFS, and doctors used that to trick me. It's sick the way people prey on hope.


Same only 25 years for me. Fluge, Mella, Edwards, Hutan, Sean, Trish, Tuller and many others KEEP people like me alive with some hope.
I agree on the hope front. Without this place, the people here and the researchers actually doing decent research I would have given up years ago.


There is just no way back from such an extreme degree of loss, abuse, and trauma.
I know exactly what you mean, and feel the same even though I have been suffering for much less time than you. If an effective treatment were developed I don't know how I would manage to reintegrate at all. How could I trust anyone, when so many people abandoned me? When so many people don't believe in ME/CFS or think we just give up?



Deepest sympathies to all of you who have been suffering so long.
 
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