Maybe this kind of publicity is what we need to arouse public enthusiasm for finding proper treatments?
In the comments section on the Spiegel website, there are several sympathetic comments by laypeople and healthcare professionals expressing support for funding these treatments.
But, I also...
To add a small anecdote about blood perfusion and cold water. Today, 4 hours after cold water immersion my feet are still feeling different and well perfused. It was about 5 repetitions of immersing my feet up to the knees into about 12 °C water for 30-60 seconds, with small pauses inbetween...
I'm seeing some symptom improvement by immersing feet or better the body in cool water. It appear to trigger a beneficial response in the body. Nothing major but it seems a clear enough hint that my vascular function is not ideal and positively influenced by this stimulus.
This accusation of having built identities around being a patient. As if there was an option to just choose a life that is not affected by the illness in every way.
I suspect it's not the emotion per se but the brain being in an excited state, which can occur while experiencing emotions but also due to mental work. So it's the work that is the issue. Experiencing emotions seems to be a kind of work for the brain.
The examples of emotional exertion given by other patients that I've seen were a wedding and birthday which involve a lot of sensory processing, cognitive exertion, and probably physical exertion in the case of the wedding.
I have maybe had one instance of emotions contributing to a crash. I...
The Covid-19 Host Genetics initiative is collecting the following phenotypes:
Critically ill covid19 patients vs population controls.
Hospitalized vs non-hospitalized patients.
Hospitalized vs population controls.
Reported infection vs population controls.
https://app.covid19hg.org/
From what...
I'm not sure how the analysis they carried out actually works. Based on what the data they're using, my guess is that it involves checking if SNPs found to be associated with covid severity, hospitalization and susceptibility (respectively) are also appearing in the self-reported ME/CFS cases in...
I can believe that self-reported chronic fatigue syndrome in sample of patients that hasn't undergone sufficient quality control has no particular relationship (probably to anything) because there is so much misdiagnosis and confusion of fatigue with ME/CFS.
Whether that is what is happening...
Did they ask long covid patients about the good and bad aspects of peer support?
I am not sure there is much value in a literature review of peer support in other illnesses. The literature tends to be written by academics who inject their own biases, not patients. And other illnesses are different.
Figure 11 published in Plasma metabolomics reveals disrupted response and recovery following maximal exercise in myalgic encephalomyelitis/chronic fatigue syndrome
The figure shows a metabolite in patients that changes much less between several timepoints compared to the controls. On some...
How do they describe it as different?
I was playing with the idea of reading patient descriptions of their illnesses to see if any clear differences to ME/CFS could be found. I started with depression and then sort of lost interest but the initial impression was that the fatigue was more or...
I have several SNPs that were associated with orthostatic hypotension in this study: https://pubmed.ncbi.nlm.nih.gov/22504314/
From what I understand the effect of each of these SNPs is small. And OH related SNPs don't explain the whole range of symptoms.
It could be a good idea for ME/CFS clinics to begin using genetic testing in selected families with multiple cases of ME/CFS or similar illnesses. The cost of testing is going down every year, the tools available are improving as well. If this is done, it should be only a matter of time until...
Even after failing to find a genetic cause for my symptoms, I still believe there is something genetic to be found in my family. It's not normal for two people to have fatigue and poor tolerance of upright posture, along with various other issues, including one typical infection associated...
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