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disabilities disability They are trying to write us out of existence.

Yes, it is, um, interesting how the most powerful possible immediate practical help that medicine could recommend – improved material support – is the very one they rarely even mention, let alone test robustly. Instead that factor is twisted into a causally untested, correlation based claim...

"...Stone says, Long COVID patients just don't have the luxury to sit this out over the next four years..." Early days yet. Wait until you hit four decades with no useful advance in understanding or treatment.

Patients are likely to enter these relationships having already encountered multiple obstacles to obtaining effective and compassionate medical care, including dismissal, denial, misdiagnosis with psychiatric disorders, personalized biases, and medical neglect [5]. It is serious abuse of power...

Exactly. After the extraordinary ongoing effort in trying to figure out how to better misrepresent sell their 'explanations and treatments' to patients, nobody in the profession can claim any ignorance of how patients really feel about having this pseudo-scientific garbage foisted upon them in...

We found 14 novel genes in ME/CFS and 73 in long COVID, many of which we also found in separate patient populations including the UK DecodeME and the US All of Us cohorts. Interesting. At first glance it seems to suggest considerable difference between LC and ME/CFS. But I wonder what will...

:banghead:

The best way to clear muddied waters is to stop stirring them up.

BACME have made it crystal clear over the years that they do not represent me or my interests as a patient in any useful legitimate way. The 'reforms' they have made are empty performative gestures designed to do nothing but cover up their appalling track record, in order to continue on imposing...

Note the way they frame it. They do not quite explicitly say that they can never be explained by physical or mental factors, and do not explore the implications of that. Instead they say that they are "not attributable to other physical or mental conditions". But nobody said they were. It is a...

The findings suggest greater neurite density and enhanced diffusion restriction in the cerebellum of patients with SSD, which may indicate possible adaptive changes associated with chronic stress. Or, the (structural) may indicate the putative "chronic stress" causal component of the SSD...

Exactly. Understanding and accepting reality is best place to start making the most of your situation, and change it where possible. Sooner is better.

It is a deliberate downplaying of and attempt to avoid facing up to the brutal reality, including the roles of governments, in bringing about the situation.

We identified a non-significant difference in the prevalence of persistent symptoms 1 year after hospitalization between children and young people (CYP) with acute COVID-19 and those hospitalized for non-COVID-19-related conditions. No, you failed to identify any significant difference.

Several non-pharmacological treatment options for fatigue are promising. Have been for decades, and always will be.

Try the Go Fund Me first. I will be happy to throw in a few dollars. If that doesn't work out, then go behind the pay wall.

Should not be used ?

Most patients with COVID-19 recover fully, Well, they seem to. Bit early to be making such a definitive statement. Not unreasonable possibility there might be long-term consequences emerging a few years/decades down the track. See Post-Polio Syndrome.

Strawmen, par excellence.

Changes in protocol are acceptable if there is 1) good reason for it, 2) it is reported and justified in full, 3) the calculations and results for the original protocol are also reported in full, and any differences in outcomes (between the protocols), and their implications, are properly...