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No, they were right, because they wanted their participants to fulfill Canadian +/-IOM/NAM criteria which require PEM, and they could not get the numbers they needed assessed by physicians, so questionnaires were the only way. The two PEM questions were consistent with the Canadian criteria...

I didn't say we have to lump all post-exertional symptoms together. What I'm saying is that if people are going to advocate separating some things out, then there should be some evidence behind those separations, not just "We think." Do a study about it. Find out what separates ME/CFS from...

You see, I look at those two and see the difference being one of duration, not of timing of onset. #1 is short-lived and #2 is prolonged. The few studies we have do seem to suggest that duration differentiates ME/CFS from other diseases. But I think we have to be realistic that #1 has been...

Absolutely fair to question that. I did look in my Jason folder for the study where I think I saw that, but there are a ton of studies and I'm wrecked, so I didn't find it. I could be remembering wrong - it might not have been a Jason study and it might not have been 100%. But that's my memory.

I don't understand this bit. Why do the symptoms have to peak immediately? Immediate onset just means symptoms start immediately, not that they peak immediately. I'm sure plenty of pwME doing the 2nd day of a 2 day CPET feel all kinds of rotten. In the NIH study, Stussman et al. 2024...

Yes, you're right that delay is mentioned in some sources as a feature that is often present, but not necessarily as the key feature of PEM. My impression is that delayed onset is what is often highlighted on S4ME as the key feature of PEM. I think there are many variables that could end up...

I understand the desire to clarify what PEM is and is not, and I would very much like to see more studies comparing ME/CFS with other illnesses, but I'm with @Jonathan Edwards and @Verity on this one. Agree wholeheartedly. I agree. I remember seeing Jason talking a lot about a "dead, heavy...

What a great idea for Orla to do the talk. It looks like it would have given people a really good idea of what you've been through and what you've achieved. So lovely to see the photo of you both and the video too. That will cheer you up on a bad day for sure. And even better that you're...

How did the speech go @Tom Kindlon? Hope you're not too PEM'd after it.

If they cannot work at all and have enough years of service (can be as few as 5 years), they will also qualify for a pension from their place of work. If they don't have enough years, they may be offered a lump sum. But the process of ill-health retirement can be brutal, and the circumstances...

Here's the relevant part of Barnado et al. 2024 mentioned in this post above: This study suggests that about 8% of people with positive ANA with a titre of 1:80 have systemic autoimmune disease, and about 16% of people with a positive ANA with a titre of 1:160 or higher have systemic...

In post #100 above, a GP guide was quoted as saying: I found the study: Narain et al. 2004.

Oh that's a nice way of explaining it. Did you mean basketball though?

That's a misunderstanding of what the 5% figure means. That 5% of heealthy people have an ANA titre of 1:160 does not mean that 95% of those with a positive ANA at 1:160 have an autoimmune disease. To find out what percentage of those with a positive ANA at 1:160 have an autoimmune diseaes...

No, they're not the same thing, because having a positive ANA does not necessarily mean you have autoimmune disease. ANA is raised by things other than autoimmune disease. And as the GP guide quoted above said, less than 10% of patients referred to rheumatology clinics with low to moderate...

Over 40s in age. People who are over 40 years of age. Nothing to do with titres.

Are people who say "I am blind" or "I am deaf" pathologically identified with that part of themselves? No. This literal interpretation is so irritating. So much of this is at least partially due to linguistic accident: autism lends itself well to being made into an adjective, whereas ME/CFS...

I found a metanalysis by Park et al. 2022 on thyroid autoimmunity and fibromyalgia. Link between thyroid antibodies and FM. In ME/CFS there's Loebel et al. 2016 who found correlations between "b AdR and M AChR antibodies with immunoglobulin levels, T cell activation, and elevated ANA and TPO...

I must look further into other studies. I find ANA is rarely mentioned, but I've probably missed some good studies. Indeed. I remember reading a bunch of recovery stories where people with a diagnosis of CFS recovered with thyroid hormone treatment - surely that's just misdiagnosis.

Are there any tests that aren't commonly done but would be able to test your idea? I was just looking at blood tests of mine, and noticing that both times it was measured, C4 was right on the lower border (0.14), and C3 was on the lower border once. I may not be typical though, as I have a...