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How would you explain that many patients (like me) have tried various corticosteroids and NSAIDs without any improvement? I also tried high dose ivig (2g/kg), It made me less prone to PEM for a period but no improvements in baseline

https://www.medrxiv.org/content/10.1101/2025.04.13.25325733v1 Abstract Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition with unclear etiology and no FDA-approved treatment. Recent studies suggest a possible genetic contribution to its...

What you can clearly see from threads like this one is most doctors consider ME to be an attitude problem and not a psych one. There are some comments calling for psychotherapy, but there are also other comments saying "get a psych eval and when it comes out negative discharge the patient...

The thing about these "alt right" people is that they are often contrarian and like to go against the established practices just for the sake of it (like denying AIDS/HIV). This often ends up in very silly shenanigans but, as crazy as it might sound, it could turn out to be a big opportunity...

@Jonathan Edwards @Simon M Any thoughts?

https://paolomaccallini.com/2024/07/17/my-longitudinal-study-a-first-glance/ A patient collected some biological markers for 2 years, trying to see if there was a pattern. From the opening of the article: What follows is a preliminary account of an experiment I have been conducting for the...

Incredible how out of touch and obtuse these people are. The problem I've had consistently in my life is underestimating the effort something would take and the energy I'm using.

I don't, it's been years since I looked and have no energy to go and get it - as for tests, an example is the whole brain MRS Dr. Younger did - the biggest abnormality there was the cho/cr ratio in ACC. I did this test myself and it was replicated (in my case my abnormality was more pronounced...

It's executive dysfunction caused by an issue in the limbic loop - basal ganglia, ACC and so on. These regions are responsible for the fluidity of thought and dysfunction there would cause those kind of symptoms. For some reason, nobody has ever thought to investigate this particular aspect...

It's the drug itself. I'm at the point where I'm too sick to do anything, I get pem just from the stimulation.

I get pem from stimulants (dopaminergics) so the answer is almost certainly yes.

I think this part could be interesting. My worst symptom by far is cognitive impairment and eosinophil activation is one of the most consistent markers in my illness. Eosinophilic cationic protein is consistently elevated in my blood (10x over normal values) and eosinophils are found in my gut...

How can you claim to take PEM seriously, and then come out saying the Hallmark of the illness is that patients don't want to do things and propose some brain imbalance is causing this behavior. If you believed PEM was real you would naturally just say this is a normal adaptation to the...

Might be slightly off topic but I think a lot of doctors are simply not bothered by inconsistency. Let's say for example that you see a naturopath and he thinks your symptoms are caused by inflammation - prescribes you some herbs for it. You tell him that you've tried many immune drugs, even...

I think he does agree with them. Most neurologists I've met that were sympathetic towards ME, did not discount the "BPS" views as false or damaging. They see the illness as having two layers: Layer 1: an array of subjective symptoms mostly related to perceptions and way of thinking Layer 2...

I think this gets to the heart of the issue. It's the prejudice everyone has, doctors and laymen. "ME" is not an illness, it's something you choose to do. Even mental illnesses do not get this kind of treatment. Indeed, if ME was considered a mental illness, it would receive billions in funding...

It's the same BS as the depression questionnaires. You feel tired? 5 points. You have stomach symptoms and a headache? Another 5 points. You don't feel hopeful about the future, stuck in bed with an untreatable illness that gets mocked by all the doctors? Yep, another 5 points. Sleep issues and...

99% of doctors will laugh at the notion of 2 day CPET proving PEM Is real so yes, we do need a study with a few hundred people done by an authoritative institution to change their mind. Either that, or we give up and decide 2 day CPET is not relevant to the illness. I don't see how remaining...

A study with 300 well selected patients just with a 2 day CPET from the NIH would basically prove that ME is real. It will be unpleasant for those 300, but I'd say that's a better outcome than having millions doomed to an eternity of malpractice.

I'm not sure I'm following the logic here (patient burden aside): Point 1) We don't need to do CPET the second day, we'll start doing other tests to measure PEM. Point 2) The primary community use of the 2-day CPET is for establishing a ME/CFS diagnosis, we didn't need it because we have an...