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Also worth noting, Brown says He admits it's a flawed paper whose author was decietful to the point of making them rewrite portions of the study, but without irony supports its contribution to the field of research, i.e. it's conclusions. The original Editor's note is gone as far as I can...

I really think McGregor is keyed into something. I don't know what that something is, but I resonate with virtually every thing he's writing and his understanding of symptoms and the corresponding lack of typical biologic causes seems to my layman eyes to be very on point. He even throws away...

It would be difficult but I think this is a challenge with clear parameters and a clear objective, and people are much more likely to participate that surveys and protests. About getting the right patients, I was thinking having stations in me/cfs doctors office and asking the patient to...

I like this thread, but maybe it belongs in symptoms not news?

Cort has an article on Nimotop today. I was able to try a dosage of 30 mg for a couple weeks years ago. I stuck to just once a day looking for the kind of response Goldstein reported, but saw no change positive or negative. I have to say seeing redflags like this is so frustrating, which Cort...

>They told me to Meditate. Then the speaker sang... No fucking joke, she sang a song... To the tune of The Way We Were -- telling us to pace ourselves. They record these calls, right?

Maybe the SMC should send someone over? I mean, they are really interested in the truth and not pushing their client's agendas, so I can't imagine why they wouldn't. I'm happy this is happening at Harvard, though. So many hospitals and colleges in the area and even the greater area.

Yes, sorry, that's what the esophogram was, modified barium swallow, but it only showed mildy delayed passage of hard food. Also had nerve conduction and needle emg of legs and arms. It's so frustrating and it's hard to stay motivated.

About 7 years ago I had my c3b levels tested. They were 14 x the max of the normal range. I have no idea what that means, if that's significantly high. I'm pretty sure I wasn't sick at the time apart from me ME/CFS. The doc who ordered it was a Lyme doc and argued it was proof of a Lyme...

I'm sorry you took a different perspective as an accusation. I believe the argument of why the assumption can't be made is clear in my post. There is no firm ground to assume anything. For example, the assumption that gallbladder removal means your were incorrectly diagnosed ignores the...

Do you attribute this to IVIG?

Idk if Jennie Spotila is on here, but if she is - thank you, you do a GREAT service for the ME/CFS community. Your blogs are important.

Have listened to the whole thing now. She seems to key in on 3 possible sub-groups. Obviously it's a very small pilot study. But the patients with iron genes reminded me of this cort article. Bascially, a young man benefitted to from very high infusion iron, to the point he was way above normal...

Interesting that AMPD3 gene was flagged (frequency of 6% in population, 50% in pwme (10)). She mentions https://en.wikipedia.org/wiki/Adenosine_monophosphate_deaminase_deficiency_type_1, which has some interesting overlaps. Obviously not a 1 to 1 situation but pretty interesting. I'm not sure if...

I was just asking hypothetical, a question that I asked myself as I was reading this thread.

But, if you had Chiari, would you? Just a thought experiment. Because one could make the same argument Chiari and ME/CFS don't look a lot alike. In all seriousness, I have great reservations about this kinds of surgery and agree we need more data, and someone smarter than me really needs to...

It is usefulness to ask whether, in general, persons with ME/CFS have symptoms consistent, in general, with people with CCI. And the pathological reasons behind asking that question. I think those are valid disclaimers. I do not understand the tendency to assume misdiagnosis of an indivdual...

It's possible he didn't have ALS but another motor neuron disease or perhaps a MND sub-type so rare only he had - that is after all how rare some of these diseases are. Anway, it's weird that he says it's a disease of old people, since there are countless examples of ALS and SMA happening to...

I'm pretty sure all that needs to be asked at this point is two related questions. 1) Can CCI produce the symptoms of ME/CFS? and 2) Do ME/CFS patients have CCI at the higher rates than healthy controls? The only way to do this is a blinded study of the MRIs and a critical review of the...

Would getting the NIH study to check for CCI also help? They would have a more neutral perspective and a healthy cohort. Because I’m not sure how a single case report would add a lot of clarity. I trust the details and veracity @JenB has given