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This sounds very interesting. I definitely had issues with abnormal regulation of glucose. I had to keep eating throughout the day or I would risk getting hypoglycemia. It wasn't dangerous (the drop in glucose was never deep) but every day I could sense that the body was stressed by having to...

I have a pathogenic variant on one allele of the ACADM gene. I've also had some issues with hypoglycemia which would fit. The conventional wisdom says that, even if this would lead to a loss of about half of enzyme activity, one defective allele is not enough to cause clinically significant...

The evidence shows slight deficits or normal function. It is misleading to present this as defining characteristic of the illness.

In many articles, ME/CFS is described as being characterized by debilitating or extreme fatigue. I don't recognize myself in this description. What about you? How would you describe the illness to strangers? I've been wondering lately how much these descriptions contribute to misunderstanding...

There is social pressure to talk about chronic illness in positive terms. That leads to living with chronic illness being labelled as "ongoing recovery" when in reality it's adaptation to the illness.

A very big part of the subjective experience of my illness is that ordinary activities become stressful and that I can't recover from this stress as easily as a normal person. It feels like there are two different aspects of stress tolerance. The first is an acute response and the ability to...

Statements like this show how much the professionals need patient input. That these have often been used does not mean they are any good.

I'm sorry to point this out, but this is a relatively common variant that doesn't cause disease.

The absurdity of the claim can be seen from the fact that such a miracle treatment would make anyone that could prove it rich and famous. The better a treatment works, the easier it becomes to produce reliable evidence of the fact that it works. This miracle treatment is also so simple and...

These treatments don't work and that is why, instead of reliably evidence, all that can ever be presented to support these claims is testimonials, uncontrolled studies, sentences like "I know people for whom it worked" and "Paul Garner is very kind and has many friends". This is all marketing...

These articles tend to acknowledge that the system is not working well and then propose to continue along the same path which led to the dysfunction. If the disease is not understood you can't propose frameworks that are based on an illusion or pretense of understanding. These frameworks are...

Chalder et al. continuously fail to understand that relationships are built on mutual benefit and respect. They ignore genuine patient feedback (like high drop out rates). This is how you build ineffective, harmful therapies. That this level of ignorance comes from people working in the field...

Unsurprisingly people who can't function in life are unhappy. They are normal human beings who have needs that cause suffering if not met. Will a diagnosis of depression help get these needs met or will it be an obstacle? Is it dangerous to discuss unhappiness with no reference to...

These days I think I've stopped believing in depression as valid clinical entity. It's just a nonspecific indicator that something is wrong. By the time a professional is consulted everyone already knows this. That something could be almost anything. The diagnosis just seems to function as a...

The last time I attempted a work-like day I ended up feeling unwell on the same day and with 2 days of PEM. This inability to work normally, which is mainly due to PEM would barely register on this questionnaire. I can get the same effect from multiple different activities over the course of...

You should send feedback! At the bottom of the page https://www.soscisurvey.de/V-PEM-AQ_english/ is an email address. I sent feedback because like you I believe the questionnaires is constructed poorly for patients at the milder end. It has the usual problem of separating activities into...

The drive to deny reality is strong in the people behind this. I wonder what drives them.

Rather than trying to find the best name for a subjective symptom, wouldn't it be best to focus on describing the impact of the illness? The goal is to be understood, right? An article with patients describing their day and why they do things in a certain way, don't do things, and explaining...

The assumption is that it's always possible to build tolerance through graded exposure. This is not true. It can also lead to increased sensitivity and worsening. It can also lead to a situation where there is an illusion of improved tolerance when in reality what has happened is a change in...

Would the patients agree they are being empowered? Have they been asked what their needs are? Are they even allowed to speak? Or is this just an empowering of professionals?