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I've always been very surprised at how little neurologists understand the neurological symptoms of ME. I'm not talking about the fatigue, or the brain fog, those are not recognized as neurological symptoms in the classical sense and they can always just they are subjective or whatever. But even...

I have not but travel restrictions should not be as bad now. As far as i know ampligen still isn't available anywhere (except the US but it's very expensive and insurance won't cover it). I might not be totally up to date though

This hits the spot. Where i live there is a POTS research group led by a cardiologist and unlike ME they won't tell you that it's psychosomatic, but at the end of the day all they do is tell the patients they will be cured if they exercise (if exercise makes you worse they tell you it's...

What's funny is i've had psychiatrists tell me they sometimes get sent these kind of patients and they have no clue what to do with them, and the neurologists will always refuse to address this issue. It's been like this for decades and the issue of the lack of communication between psychiatry...

Even if we assume ME is caused by an Enterovirus, Enteroviruses are really common so i don't see why they wouldn't be able to sneak in while the immune system is busy fighting another major infection.

Anecdotal of course but i tried very high dose steroids for 10 days (methylprednisolone 160mg per day) and they only made many of my symptoms worse (mainly disautonomia related). 0 improvement.

I suppose what dr. Edwards says makes sense - medicine has a lot of problems, but ultimately if society at large gave a damn things would be different.

But, couldn't you say that there is huge political pressure to having less strict social distancing to try and lessen the economic consequences of a pandemic? Sure the medical committees have a lot of power, but so does the government and the stock market. It seems predictable that the resulting...

Yeah i was surprised when he said that up until 1905 doctors didn't believe in infectious disease (4:23). That can't be true right?

Dr. Edwards is right here. Unfortunately there are a few individuals in Italy who keep publishing papers for clout (multifactorial condition, immunology, autoimmunity, cytokines, psychiatry, personalized medicine, educational/psychological approaches etc throw everything in there to appease...

Yeah KDM is interesting guy - until very recently he used to run LTT tests for lyme, which would come up positive in 90% of patients and proceeded to prescribe heavy abx regimens to everyone (you can imagine how that went) and claim ME/CFS was actually lyme disease. I've also seen the tests from...

A friend of mine with a diagnosis of ME/CFS needs to move (temporarily) to Argentina, the climate there will help his health, but due to covid travel restrictions he can't be allowed to fly there unless he proves that he has a medical condition that can be treated in Argentina but not where he...

Hello all, I have recently done a lymphocite panel that included CD3+CD8+ CD57+, among other things. It is very low, in my case. I did that panel again after a few months and the result was confirmed. Oct 2019 CD3+CD8+ CD57+ 17 /mmc [170 - 375] July 2020 CD3+CD8+ CD57+ 23 /mmc [170...

This is a very interesting symptom that i also have, but never paid much attention to. Most of the time i can hear my heart beat, not in the sense of hearing the "swoosh" in my ears, i literally feel the heart doing its thing. I guess it's not normal? Sometimes, i think when laying down after...

I'm sorry but you're gonna have to google those questions, i don't have energy to answer. But the image you showed us doesn't have any test for active EBV infection

It's mostly standard stuff. EBNA, EA VCA IgG for EBV (standard stuff, shows only if you had it in the past), CMV VZV HSV1,2 IgG (same as before), T cell panel. The only unusual test is the IL-2 soluble receptor.

I'm sure symptoms don't dictate her life anymore since she can now "walk with help". She is also "more hopeful and confident" about the future after a bunch of psychiatrists said "you will totally recover trust us!" so basically she is cured

https://paolomaccallini.com/2019/05/05/impedance-the-biomarker-you-wouldnt-expect/ A highly technical analysis with mathematical models, @Jonathan Edwards might be interested

Hello everyone, MR with spectroscopy is available where i live. Having proof of neuroinflammation would be very useful to be taken more seriously by doctors. Unfortunately they don't measure the whole brain, only an area that is 8x8x1 cm, so i have to choose where i want the metabolites to be...