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These frameworks are also problematic because they replace listening and making an effort to understand the other person with reducing the person to a stereotype. They're teaching society to make shallow, dumb judgements.

Attaching these labels and descriptions, who can subtly do harm in a myriad of ways, to a whole group of people without the consent of that group is a form of violence. Labels and descriptions affect the relationship between patients and the rest of society. I don't want someone else intrude...

When I read this sort of thing, I get the sensation they view patients as group to be exploited. As is usually the case, an ideology is created to make it all seem sensible, compassionate, a wholesome good thing. Probably the people behind this even genuinely made themselves believe they are...

I remember once reading about a patient that had a ME/CFS-like form of migraine, who responded to medication for migraine.

This reminds that the other day I heard of a patient that had episodes where, in order to recover, he was forced to lie in a darkened quiet room for half or a whole day. The illness was migraines. I don't know what these episoders where triggered by; it sounded like they didn't occur often...

The link "genetic association related to the immune system has been demonstrated in the early onset peak" is broken.

I find this hard to believe because I see next-day decline in performance (physical and mental) all the time in response to excessive exertion. I suspect the CPET or this particular protocol is inadequate to measure the phenomenon. The reason may be that what counts is the cumulative exertion...

So if I have understood this correctly, these B cells are in a state of increased rigidity of cell membranes, which alters how they receive and send signals? And we aren't sure if this is a side effect of an underlying metabolic issue or if it is "intended" because the cells are doing so in...

I thought the narrative of autonomic dysfunction referred to dysfunction of the nerve fibers involved in controlling vasoconstriction. This would then lead to problems with blood flow back to the heart and to the head, causing symptoms like tachycardia and heart pain on standing and brain fog...

It precisely felt like one system compensating for the weakness of another system, but with the first system being much more perceptible. The following description is of some of the autonomic symptoms of my small fiber neuropathy during its peak: My automatic breathing was weak. It felt like...

This is more how POTS felt to me. Like a compensation for some undefinable problem.

I agree that many diagnoses are questionable and that there is a problem with the proliferation of unreliable diagnoses. The typical answer to the problem is more of the same or nothing useful at all. Replacing one unreliable diagnosis with another (like hEDS), of the psychosomatic variety...

Fragile doctor egos need the patients to have an "imaginary illness", or whatever term is in fashion this decade, so the illusion of competence in every situation is not shattered.

Allowing an institution to demand that a patient tries unproven treatments on the grounds that a positive effect is theoretically possible gives the institution a way to reject claims indefinitely. There are more theoretically effective treatments than a person can try in their lifetime. It's...

Yes, I feel stressed, but it's not a normal kind of stress.

I would like to talk about a symptom that is challenging to describe, but maybe easy to recognize in a description. The symptom is challenging to describe because it is subtle and not intense, but despite this has a substantial impact. Spending time doing activities, or spending time upright...

His experience seems like something that would be useful to test with other patients and in more controlled way. I feel much better for a while after certain stimuli like cold water immersion or sauna, if done the right way. I can believe what he says.

My experience with milder stimulants like carnitine, tea, coffee is that they work for increasing activity and motivation in the short term, but that the underlying difficulty tolerating activity doesn't improve. I end up excited and exhausted at the same time, with worse sleep and difficulty...

Association is not causation and there are other possible explanations. For example, mitochondria are maternally inherited which would be consistent with children having a risk of having similar unexplained health problems as mothers. Mitochondrial problems are also difficult to diagnose and our...

Information on how to live with a disability in general. The importance of acceptance, understanding the legal aspects, how to speak with others about the topic. Information on how to live with the particular problems associated with the illness. Which is mainly pacing, learning to recognize...