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I mean, it's not like having a bunch of scattered patients doing fb fundraisers gets you anywhere anyway. What is needed is a large scale structured plan with leadership and good narratives. We don't have it because of the reasons I listed above but the patients struggling in their lives is not...

I think there are many reasons for this: - lack of acknowledgement from doctors, BPS propaganda, means it's hard to persuade people to donate and create a structured plan that really gets people interested. - low quality advocacy (wrong narratives, lack of proper strategy and execution, etc)...

Many years ago, when I could still leave the house, I tried going for a swim at the beach. I like going underwater and somewhat far from the shore. After 5 minutes of swimming I suddenly realized I became extremely weak and almost could not move my limbs. I was able to get to the shore because...

Wasn't polybio all about replicating those tissue viral studies? They got a ton of money too. What happened to that?

To be fair though, that's what everyone thinks. Everybody judges your life. That's why nobody wants to research this illness and when they do they are usually tone deaf and don't understand things like PEM at all (which you could easily understand if you just listened to the patients without...

https://old.reddit.com/r/doctorsUK/comments/15mpc2o/nhs_told_to_stop_blaming_me_patients_for_being/ More insights from the brilliant minds of r/doctorsUK. I have to say though, shit life syndrome would be a pretty accurate name for my illness. It's just that, what those doctors consider a...

There's a reason MS isn't called occasional mobility issues syndrome, and schizophrenia isn't called chronic delusion syndrome. Or autism chronic social awkwardness syndrome. It's much easier to dismiss and misunderstand an illness if it's named after only one of the many symptoms...

Not as far as I'm aware (another missed opportunity).

I really hope I'm wrong but this is looking like the half assed studies that have gotten us nowhere in the past 40 years. This is why it was so important for the advocacy orgs to establish a strong narrative. If people aren't motivated they will just do the bare minimum to get their salary...

How can this be squared with the metabolic room showing no differences from controls?

Do JAK inhibitors have the potential to work better compared to steroids (methylprednisolone, prednisone, deflazacort etc) when it comes to fatigue associated with cytokine inflammation, or is the main benefit the lack of side effects compared to steroids? In other words, what I suppose I'm...

That should have been up to our advocacy organizations, but unfortunately we were not lucky in this aspect either.

I find it really insulting that the NIH kept saying for years there is no funding for ME because the researchers requesting the grants have low quality science, and then they waste this much money doing no science at all.

This recover thing is straight up a scam. In a just world, there would be an investigation and people would end up in jail.

Or, maybe, the patients actually have objective cognitive impairment your tests are not capable of measuring, and being denied and mocked by doctors is reflected in the anxiety and depression scores. Or alternatively, those scores reflect symptoms of organic illness (you know, the same illness...

The trials are really disappointing. The chance of anything working there is almost zero. They really don't have a clue.

It's like asking Tarzan to come out of the jungle and show confidence at a formal dinner with business executives. Or grabbing a business executive, stripping them naked and throwing them in the jungle to fend for themselves. I don't know how you could possibly feel confident in those scenarios.

I have this problem as well. Psychologists have told me that I'm a ghost, I'm like someone that doesn't exist. It's pretty spot on, except that they were trying to interpret this as a symptom of a mental illness because of their flawed training. To them, it appeared that I have no interests. I...

This is an important point. I wanted to write about it here for long but didn't because I lack the energy. Anyway, what we should have focused on with our advocacy is the fact that ME (when it's severe enough) completely takes away your possibility of self actualization. You are denied...

I don't wanna diminish his writing or anything, but this is literally just what patients say. It's not hard to listen and repeat. It's just that nobody takes us seriously because of preconceived notions about our illness being fake or exaggerated. EDIT: I didn't want to sound ungrateful; I...