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I realized that I had a negative attitude towards the idea of taking responsibility because I associate it with ideas like "overcoming the disability" and the misperception other people have that I could control the situation but choose not to... roughly the opposite of acceptance and adapting...

It probably doesn't mean anything. HLA-DQA1 is a highly variable region. Everyone would have pothentially pathogenic variants according to variant effect prediction tools. These tools are made for analyzing "normal" genes. Some of them could affect the risk of ME/CFS but there is no way of knowing.

While there were many potentially pathogenic variants in my data, there was no clear evidence of a genetic disease. I did find some variants that probably constitute risk factors for various problems. Knowing that I have elevated risk for certain conditions is not particularly helpful. Zhang...

For me PEM is a delayed reaction to an increase in exertion or stimuli. The reaction can worsening existing symptoms and make new ones appear temporarily. PEM can begin hours after activity in the form of some subtle sensations, like feeling tired and wired, worsened cognitive ability and...

My concept of PEM differs from that of the authors and the questionnaires leave no room to express what PEM is like for me. Question 5 is about how effective pacing is for reducing PEM. The answer is it depends on how much one's life circumstances allow one to implement pacing and how...

Wessely is the person that will do the dirty work of stigmatizing, marginalizing, downplaying and denying for the people in power. So the hate falls on him, and not the people in power.

I agree with everything and also with you.

If patients are left with no recogition of disability, no financial support, no social inclusion, and ultimately, no vision of a future worth living as long as they continue to be disabled, they may react in three ways: 1. Give up entirely. 2. Try to cure their disability (if they have the...

This article shows how desperately we need a competent healthcare system that can ADMIT that there is a serious problem it cannot help with. This descent into quackery and increasingly absurd ideas is driven to a significant degree by the lack of financial support and validation, sometimes with...

My explanatory model was approximately: there is some undiagnosed illness that makes it impossible to live a normal life, and to treat it, I must obtain an accurate diagnosis. Other people seem to have difficulty understanding me and tend to give poor advice and ineffective treatments. This...

I have the same question. How do these two diagnoses interact? Is it possible to confuse ME/CFS for autism/ADHD or vice versa in some specific conditions? Is there some shared underlying biology that makes it more likely to develop the other diagnosis if one already has one these two diagnoses...

ADHD and autism tend to go together. ME/CFS is acquired, while a diagnosis of ADHD and autism need to be supported by a life history consistent with these diagnoses (permitting for significant fluctuations in severity).

It's just a description of what I think is the underlying psychological process. It seems to work like this: A person that is newly disabled does not know how to have a positive relationship with another person that includes the disability (for reasons everyone here understands well). If the...

My autism specialist told me "people with autism have a lot of gastrointestinal problems". It sounded like an uncontroversial statement. I agree that there's a insufficient attention given to these and some other aspects of autism. My impression is that the focus is usually on social skills...

I've suspected for a while that MDD is defined far too broadly.

How do you use it? What difference has it made?

My tendency to overshare information about the disability alternates with hiding the disability. The hiding (masking) is stressful and that leads to a desire to instead do the exact opposite. That desire accumulates and then manifests occasionally as oversharing.

Your comments fits well into this thread. I experienced a similar attitude by family. My father is a doctor who attempted a management strategy recommended in some books for somatization disorder. This involves intentionally not taking the complaints seriously because that is expected to lead...

The problem arises because the usual questions asked during the process of getting to know a person cannot be answered truthfully without also revealing indirectly that I'm disabled. I suffered unnecessarily because my issues were misunderstood, so I'm concerned about people misinterpreting the...

What great advice I gave myself here! But almost a year later, I'm still making the same mistakes and am not good at talking about my disability. A bit less bad, at least. It's certainly one of the most difficult topics to discuss with anyone. Now I'm inclined to think that I'm oversharing...