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Excuse me? :banghead::ill:

Thank you so much @EducateME I will be sharing on Social Media.

The tweet would have been helpful if he had replied to the twitter account attached to the organizer. As it is right now it may well not be seen where it matters.

There is a world web based conference tomorrow and Thursday, discussing Long Covid. I would have loved to attend but it will be 3 AM where I am and therefore will prioritize my sleep. What I am most curious about is them modelling the Long-Covid management with Chikungunya. No mention...

it is not recommended to get a vaccine if you have an active infection, even if it’s a cold.

Well, the last 2 sentences are worth it to me, as this is now part of scientific literature. This work needs to be done. While it may not bring heartwarming feeling of a biomarker or a target drug, simply stating that patients are not receiving care is important. We cannot have accurate...

This thread reminds me that it would be nice to have a drug trial going or at least in the works.

I wonder what the group of physicians who got long COVID and wrote a letter to editor in a sci journal would have to say about this article? Would they appreciate the suggestion that they may catastrophize too? I am so fed up with the gaslighting.

Here is what the first 2 sentences say, under ‘background’: occasionally affects the lives...? Oh really? And the list of symptoms... cervical stiffness... really? Which criteria do they go by? vertigo... would be uncommon, why name it up front, could it be you selected it because it fits what...

A hot mess?

I attended a presentation last year at a university, and the researcher lamented that with 50 millions funding for dementia, they could’t do much. To me it reflects on the additional barriers we are facing in the field of ME, the paucity of researchers, the stigma, the lack of funding. Maybe...

I am not sure the word is allowed but i will try... why are these people allowed to bullshit like this? Don’t they know that a minute change in daily routine, or a change in their thoughts will not change disease status? And don’t they dare trying that on Long-Covid patients. if you don’t have...

It reminds me of this paper: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02405.x I am not exactly sure how the results compare, but perhaps the novelty is all about trigger PEM from arm stimulation+sensory triggers from presence of someone, and having a conversation with...

This showed up on my twitter stream: Moderator note: This has been posted and is discussed here: https://www.s4me.info/threads/forward-me-group-minutes-thread-july-2020-onwards.16000/page-2#post-298803

These treatments would be offered off-label by specific doctors, under the right circumstances. Here in Canada, there is a much tighter regulation against the use of off-label drugs, especially if the drug cost a lot of money, requires IV administration, and is riskier for the patients. Also...

Who knows whether it is available for clinical use? Would like to bring this article to the attention to @Jonathan Edwards to the new paper. I am sure he delved plenty in ANA over the years. In the past he has mentioned that ANA didn’t mean a whole lot and that positive ANA was common for the...

The antinuclear antibody dense fine speckled pattern and possible clinical associations: An indication of a proinflammatory microenvironment (2020) Lundgren et al Abstract Background: Indirect immunofluorescence (IIF) is the most prevalent screening antinuclear antibody test for systemic...

i think that amino acid utilization is interesting and may be providing clues as of what is going on in the muscle cells (albeit in vitro). But i am more interested in knowing 1) why this is happening. 2) whether the same thing happens in other diseases 3) whether the muscle cells return to a...

Nice to see that Jonathan Kerr is still in the field. I worry about the focus on psychological stress.

I agree with you @Forbin. Back in the early days, because i was believed to be lazy and faking illness for secondary gains, i went for a run as i did in the pre-illness days. I was determined to prove them i was not lazy. It was really weird because i could not run as before, i had to alternate...