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Metro UK: What is long Covid? Why some people aren’t recovering from coronavirus

I know this is getting off topic, but a description of pentoxifylline properties: Here is a description of the mechanisms of action https://www.ncbi.nlm.nih.gov/books/NBK559096/ Given it’s anti-inflammatory and immunomodulating properties it also improves red blood cell deformability and blood...

I’ve wondered if ME doctors would do a trial of drugs like pentoxifylline or cilostazol (normally for peripheral artery disease), especially pentoxifylline as it has some potent anti-inflammatory and immunodulating properties. They are both generic and cheap drugs too.

Clickbait sadly

NYT: Small Number of Covid Patients Develop Severe Psychotic Symptoms Happens weeks to months after the infection.

https://www.jci.org/articles/view/140491 ScienceDaily News piece on paper here Of particular interest to long COVID research is they found immune dysregulation in non-hospitalized patients didn’t resolve quickly as well as activation and exhaustion markers increased during the...

ITV News: 'I want my life back': The desperation of 'long Covid' sufferers out of work since March

This is the standard medical establishment reaction to illnesses where understanding of pathophysiology is really poor, like with ME. They just don’t know what to do so they throw the kitchen sink (or hot potato?) at it. It will fail patients because the illness is very disabling and there are...

Yes, I think doctors feel even less incentive to do a proper trial when the treatment in question is already generic (affordable) and they can easily prescribe off-label. Patients don’t push for proper trials in this case because they don’t have to wait many years and can do a trial of n=1. I...

It could also very well be that on the Zoom meeting they discussed far more details as it was a meeting for clinicians and investigators. I wonder if we can get more information from the meeting.

Maybe we are assuming too much of the intent of Stanford’s retrospective chart review, it could very well be to look at the data they have before going forward with a trial, whether open-label or blinded placebo controlled. From what it looks like OMF and Stanford might do this and did the...

May I ask then, in pwME why do we not see even remotely close to those percentages for any drug, procedure, supplement, etc? If you say placebo effect is typically that strong? In pwME interventions historically have anecdotally shown benefit (whether placebo effect or not) in zero or very small...

Almost all treatments and procedures do not give benefit in ME, so I think some clinicians feel they need to have new treatments and procedures that get their patients coming back for more visits the doctor?

Here’s the paper

Dead end. I know it’s just my case but I had NT-proBNP measured as part of a battery of cardiovascular procedures and tests to look at my heart and the NT-proBNP results were almost zero. Unfortunately, I was only able to get these tests in my third year or so of illness and wished I was able...

The other thing is this phenomenon can change over time, so that’s important to take that into account during study. But I agree it’s a super interesting thing to study because the symptom appears suddenly and is very pronounced. During the first 6 months of ME, after the triggering viral...

The problem too is that everyone with long COVID is still in their first year of the post viral syndrome stage. My ME symptoms and overall experience were so different in the first year than the years that followed, and it feels so completely different now than it did then. The disease evolves...

Last time I checked diagnosis and scientific research on the pathophysiological similarities between two supposedly distinct conditions doesn’t take into account if patients “feel” their illness is different than another illness. So much subjective bias goes into that. They have no clue. I have...

Do we know if ME/CFS affects periods in the early stages?

Coping is such a euphemism but ok. Coping to me means still being able to live much of your pre-ME life though with more management and some difficulty. Losing most everything isn’t coping it’s subjugation.