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I'm not sure that it is 'not a nice letter'. One of the links in the letter is to a paper that referred to both CFS and FND as neurological conditions and concluded: I think the letter writer may actually have been saying, 'look, you said Long Covid is a lot like CFS - maybe a better...

We have these threads that may be appropriate for some of your posts: Long Covid epidemiology (prevalence, incidence, recovery rates) Long Covid biomedical research (not epidemiology)

Yes. I just wasn't sure if Julia Newton retained some ongoing responsibility too. It appears not, so all the more reason to give that PACE page a good re-write.

Sonya Chowdhury's response to the complaint looks good and I agree that AfME have better things to do now than deal with this complaint. But, I do note, clicking through to the AfME page about the PACE trial, that it could be a lot better. It still gives an impression of some fence-sitting...

A number of earlier threads have commented on AfME documents and webpages: 'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020. Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy (members only) A4ME Treatment...

https://www.psychologytoday.com/us/blog/patient-zero/201812/the-diagnosis-and-treatment-chronic-pain Robert C. Smith is banging the same drum as he writes why people with chronic pain should not get opioids. Apparently the following treatment solves all: (it involves a lot of patronising and...

:rofl: I won't comment on the others, but not being able to play golf is not one of the tremendous losses in my life.

Thanks Michiel. What a shame this is paywalled. I wonder if the people who go on to develop chronic Q fever experience Q-fever fatigue syndrome symptoms after the acute infection and before the chronic Q fever becomes apparent. What this suggests to me is that the Coxiella bacteria persists...

We have threads on two papers by Dr Bruce Patterson: Persistence of SARS CoV-2 S1 Protein in CD16+ Monocytes in Post-Acute Sequelae of COVID-19 (PASC) ..., 2021, Patterson et al (in prep) Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning Patterson et al...

Partly answering my own questions: https://nyulangone.org/conditions/compartment-syndrome-in-adults/diagnosis So, you could anaesthetise the muscle and then do the invasive test. Or an MRI might detect the pressure.

It is interesting. I think the authors should be commended for thinking beyond a hand-wavy central sensitisation theory. The relationship between pain and muscle pressure isn't really the key thing here - as @Snow Leopard said, there's potential for a lot of fuzziness in pain reporting...

True, but there have been successes. HPV is one: The fact that people realised that a virus that infects nearly everyone can cause cancer decades after the infection is heartening, with the development of a vaccine, and the complicating issue of not all strains of the virus being carcinogenic...

I'm sure that there is much that is arguable or wrong in that article. For example: Even I, being a bit open to the idea that pathogens including chikungunya might cause chronic joint issues, can see that the author took a leap from weak evidence there. But, the author is suggesting that some...

Great stuff @FMMM1. Relevant to this call for appropriate research outcomes: NIHR's funding of the development of standard research outcomes for Long Covid, with the principal investigator someone from Kings College London who runs an FND clinic. United Kingdom: NIHR Long Covid research funding...

You and @rvallee are probably right, certainly about the futility of dealing with stupid people. But, at least on the days when the IACFSME isn't publishing Lightning Process promotional material as science, or something else equally incredibly bad hasn't happened, I think we can change things...

I understand that most good scientists would not want to spend a lot of time sitting in a committee trying to convince people who don't understand, talking about useful standard outcomes. But maybe the patient advocacy groups would see this as important? They should. As nightmarish as the...

I won't write here what I said aloud when I read the sentence I bolded. Possibly trying to make that study have a good outcome will be very difficult. Perhaps we need to support another group to make a good set of research outcomes.

I've been banging on about how the development of standardised research outcomes in treatment and illness course studies is really important for ME/CFS and related illnesses. This is important work, it could fix a lot of the problems we have seen with ME/CFS research - I hope it's not stuffed...

There was no group of people who have had Covid-19 but who don't have lingering symptoms. The healthy controls had to be seronegative. Being able to identify people who have never had Covid-19 from those who have recently had Covid-19 isn't as exciting as being able to find a difference...

Figure 3 (as best I can work out - the charts in Figure 2 are just leading up to the conclusion presented in Figure 3) So, here again, there are three charts, with classical monocytes (defined as CD14++ CD16-) on the left; intermediate monocytes (defined as CD14+ CD16+) in the middle; and...