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Rekeland et al. did not condone widespread use of cyclophosphamide in the 2020 paper. Here's the unedited context of the part you quoted, including the text that preceded and followed it:

Thanks, @Hutan . You outlined the reasons why I think the data are still relevant really well – you saved me a post! I think what’s difficult, @siobhanfirestone , is that you’re posting your story – which is fabulous; on a personal level it is so wonderful to hear of someone going from sick to...

Yes, the SF36PF only measures physical function, which is relevant in this thread where return to exercise and step count are being mentioned (validly) as evidence of remission, and where we’re looking at people who started off with SF36PF scores of 30-59 and ended up ≥ 90. Their physical...

Really glad you’re doing well @siobhanfirestone , long may it last. Enjoy. For the overall scientific discussion, I think the PACE trial’s specialist medical care only participants can give a bit of perspective on what you might expect to happen to someone with moderate ME/CFS over time...

Wonderful news! I’m delighted for you that you got a joint assessment with the ENT and a speech & language Therapist – I used to do those joint assessments and they work so well, so much better than seeing the ENT first and then the SLT. Will you see the SLT again or was it a once-and-done...

I don't think you're overthinking anything, I think you're trying to get access to the service you should have had many years ago. Do you know which trusts (if any) that you could be referred to have SLT services at the moment? If there aren't any, then it may be another pointless trip to ENT...

Since you've already seen a number of ENTs and all have said your laryngeal exam was normal, I would think about making this ENT appointment your last (unless new symptoms arise). If you don't get the SLT referral you want from this appointment, I think your energy would be better spent getting...

I’m a Speech & Language Therapist, retired due to ME/CFS. I have experience with voice disorders. We used to do joint clinics with ENT, where the ENT doctor would use either a rigid scope (straight into mouth with a camera on the end that looks down) or a flexible scope (up nose and down back...

Very helpful post. I had seen it, and then apparently erased it from my brain.

From part 2 of Jeanette's blog: Does the part in brackets mean that her analysis of virtual rewards won excludes the five patients she argues should have been excluded? Ns would be helpful.

Yes, you're right.

You sign a user agreement that says you cannot share the data except with others registered with mapMECFS. So you can analyse the data and share the results of that analysis, but not the data. My account came through within a day, so you shouldn't be waiting long.

In part 2 of Jeanette’s blog, this bit (that @forestglip and @bobbler mentioned above) stuck out: I don't think this is right. Participants won actual rewards, not virtual rewards, and the amounts won were much lower: Edit: As @Theresa pointed out, Jeanette is adding up potential rewards...

I find it interesting that you see this 1/3 figure being used by some (sorry, can't come up with other names, am shattered, but there was an originally-Irish-but-working-in-UK doctor who wrote a book with a chapter on ME/CFS and case studies of, among other things, functional blindness, who used...

I mentioned these van Campen severity ranges in an email to Dr Walitt - I wonder if this influenced this part of the Q&A the NIH subsequently posted https://www.nih.gov/mecfs/nih-intramural-mecfs-study-qa I see the availability of data and willingness of the authors to email with patients as a...

I have only skimmed the draft, so just a couple of notes on this particular bit: For anyone who wants to quote any calculations based on data available from mapMECFS in a publication, the following must be cited (according to mapMECFS): I have amended my original post to include this info as...

Thanks Trish. I remember doing it through thick brain fog. I had to check and double-check and triple-check and quadruple-check all the "increase"s and "decrease"s to make sure I had the directionality right. Maybe this is a brain-friendlier way of expressing it: In a study at a centre where...

Just noticed that this letter on measuring improvement and deterioration with the Chalder Fatigue questionnaire is now Open Access: https://journals.sagepub.com/doi/full/10.1177/0141076820977843

A preliminary scatter of hard task completion x physical function. Mistakes are possible so this should be double-checked by others with access to the mapMECFS data. NB The number of dots does not equal the number of participants in the EEfRT task because repeats are displayed as one dot...

Good news, Dr Walitt wrote back and directed me to a file for the EEfRT task in the mapMECFS datasets. It's under "Neurophysiology Data Files" amongst heart rate, tilt test, lumbar puncture etc and I had missed it. So you will have all the data you need. I'll look at it when I can too.