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@Arnie Pye NAC is widely used to break up thick mucus regardless of cause. I am happy to use it for some symptom relief for longer or shorter periods myself, but don’t find it particularly interesting for a complex set of ME-symptoms.

Exactly. Every time limited resources are spent on things most of us has tried and dismissed already, it feels like a step back, not forward.

The insect crawling is typical for pheripheral neuropathies. I had the cold water part for years. Have since discovered that during better periods, the “cold water areas” is the same areas as where I have consistent pain/tensions... It seems like my brain/nervous system misinterpret pain to...

I have been told that these symptoms are Neuropathies. Nerve pain, as someone mentioned above, is quite different and often an isolated problem with a clear cause (herniated disk in my case).

Good point, but I think hydrocortisone is special there. That is also the case for non-ME-patients. Should have specified Immunosuppressants other than Steroids.

Only reason I can see is if it is masking symptoms/giving a false feeling of effect and/or making one ignore symptom -> use more energy than one actually have => crash/getting worse in the long run. Unless we are talking about placebo, I have never heard of anyone experiencing that with...

@Jonathan Edwards I’ve seen many tweets like this from VanElzakker. Does it make sense to you in a rheumatologist perspective? It’s not like one keep looking for “a deeper cause” in rheumatology patients, any effect from immunosuppressant is a win in your field, isn’t it?

Exactly. I am already picturing all the Success Stories media are going to drool over for a decade...

@Mithriel it can be emotional on many levels. I find it tough to read doctors admitting lack of empathy/understanding of our symptoms until experiencing it themselves. Have seen a few claim to think they will be better doctors from now on... but if these individuals become spontaneously...

I also think there could be possible benefits from having Long-Covid being researched from scratch without the connection. If they discover something that ME-researchers has not already thought of, it would be easy to test if ME-patients have the same.

I don’t see a problem with warning against pushing yourself and at the same time not calling it ME. It is already done. If a hard training top athlete gets mono or other post-infection setbacks they are often out of competition for 1-2 years.

Hard agree. I would even go as far as to difference between ME after 1 year and chronic ME after 3-5 years. 3 years if no improvement/worsening of symptoms, 5 years if you are in the midst of an an ongoing gradual improvement at the 3 year mark.

This got me thinking, and it made me start a new thread...

I do of course see the hope and positive possibilities in this. But I’m starting a thread for discussing concern around it as well. Please have in mind that we know nothing about long time effect from Covid, nothing about how long it will last. It might become like Mono or lung infections where...

CNN reporter Richard Quest: I got Covid-19 two months ago. I'm still discovering new areas of damage https://edition.cnn.com/2020/07/07/health/richard-quest-covid-wellness-intl/index.html

FYI: I think non-profit organizations have access to unlimted Numbers watcing upon request during COVID-19.

I miss a bit more info on the differences between PEM and the kind of fatigue/sensory overload other chronically diseases get after pushing themselves... I have already witnessed someone with a psychological diagnosis using the word PEM for being knocked out after being social. This person...

Good to hear that you were taken so good care of. Would it be possible for you to ask to be put on a waiting list to become his patient if he has any openings in the future?

You were right to make the call. A new headache or a new kind of headache should always be mentioned to a doctor. @InfiniteRubix

It does. Thank you!