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The powders are quite expensive. Is there a specific reason why they should only be grown and produced in the UK? This limits your choices. I like Koyah, but it's a US product.

In the meantime, the best #1 advice doctors can give to their patients right now is not to exercise or push themselves.

I agree with you on this 100%. Clinicians and researchers have focused on the acute phase of COVID-19, but continued monitoring after discharge for long lasting effects is needed. Hopefully this will bring a new world wide awareness on PV syndromes and benefit pwME too!

@rvallee I don't think there is much any doctor can do for PVFS except advise their patient to rest and wait it out. If they go through testing and have symptoms such as heart issues, low BP etc., then those are treatable with medications. What else should they do? I had 'extremely'...

Nothing that I've seen so far in Canada. Mostly infectious disease doctors stating that post-Covid symptoms could last for months and result in autoimmune-type illnesses or long term health conditions.

I was thinking the same, but then again I rested a lot for 9 months (after viral onset) only to have a relapse within a month when returned to work. So it appears I felt well enough to return to work, but when I went back to normal activities, I relapsed and was worse the second time...

Janet Dafoe on PR: "Ron isn’t ready to talk about the new theory yet For several reasons. I can tell you that it does fit in nicely with Naviaux,’s theory as well as the metabolic trap". https://forums.phoenixrising.me/threads/ron-davis-severe-me-cfs-day-quarantine-video-update.80965/#post-229045

Healthy people can also develop some heart racing when they have an infection. I've read about several post-COVID who developed autonomic issues. I developed OI after a negative reaction to immune modulators that reactivated HHV6 and EBV. Totally changed the level of my disability.

I think it was Dr. Paul Cheney who rx'd Amantadine (antiviral) usually used to treat Type-A influenza virus and is sometimes used in ME/CFS for its stimulating properties.

https://n.neurology.org/content/neurology/early/2020/04/09/WNL.0000000000009455.full.pdf

What about ME patient who never fell ill from a viral infection. I've met many who don't describe their experience as post-viral with no recollection of ever having viral symptoms at all. All were slow onset subgroups.

What will happen if/when they discover a medication/treatment that improves their health drastically and they return to their previous life? Some of course may not as a result of damage to organs/vascular system depending on the severity. I saw an Internist back in the early 90's who...

There is no such thing as "Post-Covid ME/CFS", and zero evidence that they are the same. Who made that term up? The ME specialist I saw in 1992 diagnosed me with PVFS, and didn't feel I had ME with his 20+ yrs experience. It wasn't until I developed PEM that I fit the criteria and I...

This sensor does not measure the severity of ME. It's not that simplistic and you can't base it on upright time. There is a difference between measuring levels of disability and severity. "Severely ill ME/CFS patients spend less than 20% of each day with feet on the floor". My best...

@Andy I feel post-COVID is in a unique category of it's own, just like Poliomyelitis. Polio is caused by one of three types of poliovirus (which are members of the Enterovirus genus). Some ME pts developed ME from enterovirus, but were never diagnosed with Polio because there are...

Why not diagnose them with Post-COVID Syndrome? They all become ill from the same viral infection. ME can manifest from different viruses etc and I would prefer ME be left out for the time being since we don't have solid biomarkers for PEM. On March 30 TV actor Nick Cordero had his leg...

This is worse in the morning for me. Is there an explanation as to why that is?

@Invisible Woman She is quizzing people on twitter regarding a patients test results. Reply from a medical doctor: "Listen Sparky...that urine pH you cited is *normal*, but since this dipstick result is inconsistent with a UTI, & shows blood in the urine, you may have just missed a...

@Invisible Woman You would have to read her whole kooky thread. She is basically saying based on her test results that, " low urine pH means you can’t wear a mask!”

Comments from a Naturopathic 'doctor'. o_O I wasn't sure if I should have posted this in the "Funnier Side of Life" thread.