251–260 of 348 posts
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>It is beyond me how people can deny post viral syndromes. I feel part of the problem is we don't really have any good treatments for it. I know my doctor put it down as post viral tiredness but when I asked how long it might last or what I could do about it he just shrugged his shoulders.
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Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…
>I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body . . . . at no point, is there a department of immunology that takes over or even contributes. As a person with Multiple Sclerosis seeing a neurologist I have been wondering this very thing since my diagnosis. I am on a B-cell depleting drug. It feels silly talking to my neurologist about my B cells. Lots of te…
https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...
It really feels at this point that not by connecting these diseases together and treating them as a class, we're missing the woods for the trees. Sadly, all of the economic incentives are to keep treating them separately and reductively because chronic diseases are great long-term revenue generators. TBC, I'm not attacking the drug companies here (UC was a killer until pred was discovered in the 1950s and Vedolizumab is working fantasically well for me) but we need the immune system to be treated as genuine clinical and research discipline to really cure these things.
My last UC flare was preceeded by a bout of shingles which is caused by an opportunistic latent virus. My doctors always talk of my immune system as being over-active. It really seems to me that it's more the immune system becoming disordered - which latent viruses play a major role in. My docs aren't remotely interested in having that discussion because it doesn't involve the details of gut epithelial cells. Fascinating as they are, I don't think we're going to cure UC or any other AI disease by focusing on them.
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Hmm. The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? This reminds me of a lot of physical/psychological/"it's all in your head" discussions with various sorts of CFS sufferer, most of whom have serious problems getting anyone to take seriously the possibility that it might not be all in your head. https://www.cfsselfhelp.org/pacing-tuto…
There is a huge amount of empirical evidence that adverse childhood experiences disrupt the HPA-axis as well as other biological systems. It's also well-known that people with PTSD have low cortisol. These aren't controversial findings. They've been found over and over. I have CPTSD and it's very clear to me that the symptoms of this "mental disorder" are in my body, first and foremost. And it's clear that after I go…
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Why were there death threats?
Here is an article for context: https://www.theguardian.com/society/2011/aug/21/chronic-fati... Anything with somatic involvement is heavily stigmatized in anglo culture, so people will respond with violence.
Here’s a story of a girl who was made permanently worse after her condition was treated as psychosomatic and she was encouraged to gradually increase her activity. On autopsy her spinal nerves were lit up with inflammation: https://www.bbc.co.uk/news/health-44969741
Here’s another of a Danish girl who was taken from her parents and returned as a husk of her former self after legal challenge: https://me-pedia.org/wiki/Karina_Hansen
There are thousands of stories of similar neglect.
I don’t know a single ME/CFS patients who would care if their condition was somatic if treating it as such was effective. People just want to get better.
Patients undergo treatment on the basis that it’s a somatic illness, it doesn’t work or makes them worse, and then they discover how few people there are looking for alternative approaches, and how flawed the studies supporting their treatment were.
I am curious what your background is. Are you an ME patient, or a doctor, or…?
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Please ask your doctor if supplements are right for you and how much.
Oh he did put me on supplements but he also recommended me to get out and get more sunlight
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Why ground beef?
Because I have tried it many times and my body has some intense urge for beef, and ground beef IMO is the easiest to make, digest, and cheapest and has fats that are good for you IMO. Some people think poorly of ground beef because "you don't know what's in it!" But moments later will tell you it's important to eat all parts of the animal because they have different nutrients. Ok then, sounds like ground beef is a go…
Once your teeth fall out from scurvy you'll be glad the beef is ground so you don't have to chew as much.
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Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…
> is there a department of immunology that takes over or even contributes. Because we don't see the immune system as the organ it is. Which is odd that things like vaccines are effectively medicines for that organ. But at the end of the day we still don't know 'that much' about the immune system because of its extreme complexity. It's still very difficult or impossible to target a bad acting immune response in an ind…
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> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints. Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests diffe…
The physical problem is bigger than the mental problem. There is an underlying physical problem, it just isn’t understood. Because brain fog and pain are the defining symptons then emotional regulation (which is super important also ) gets overblown. A convalescant event effectively transforms you into a really terrible athlete with shameful recovery periods. Being physically injured like spraining an ankle is so men…
Ohhhh... this explains so much about why what are otherwise mild injuries can absolutely throw off my rhythm and disrupt my productivity. Having even a low-grade injury ties up cycles and is like a background task set to prevent going into power-save mode, because it's like a constant potential threat/alert.
Can chronic fatigue type syndrome that only effects you mentally, not physically? I have zero energy to do things that take mental energy unless I take ADD meds and even then it is a struggle. But doing things physically I have no problems. Like to the point I would rather walk a mile somewhere than figure out how to buy a bus ticket in an unfamiliar city.
Sounds like textbook ADHD. Walking a mile is a straightforward task with a known outcome and predictable risk/reward scheme. Figuring out bus ticketing is a novel challenge requiring a certain amount of executive thinking, planning ahead, holding multiple things in working memory, all things which can feel aversive to the ADHD brain.
Occasionally I think the medical world has a communication problem. In 1989 I had some blood work done which checked for Epstein-Barr (it wasn't present) for reasons that made sense at the time. Then I got ME/CFS a few weeks later, and blood work showed that it was present this time. That's not a slam-dunk for Epstein-Barr as a cause, of course, but I thought it was interesting enough to have the data that I talked t…
People have been saying this about post-viral sequelae and EBV and CFS for a long time, but the evidence is just not there. EBV is incredibly common, it is not surprising that many who have had ME/CFS would have it. The medical world does not know how to communicate about problems that are likely coproductive of psychological and physical causes, especially in a post-AIDS patient advocacy world, simply because patien…
But in the cases where the other prerequisite conditions are met, EBV is usually the causal trigger.