https://www.smartsurvey.co.uk/s/GX4HMU/ I took the survey and it did only take 10 minutes. Wanted to know your symptoms, medications and treatments. https://me-pedia.org/wiki/Derek_Pheby
I've started this. There's a question that says, How many investigations of your ME/CFS (blood tests, X-rays, scans, etc.) have you had? How many blood tests? I'm not sure I know. I've been ill for a long time.
Thanks for posting this. Agree that this is not a good question. Also: question 19 and 20 are the same
I think I'd need more information about who the authors are and how they will be using the data before I complete this.
I replied, along the lines of: ‘Blood tests only - no idea, but at a very rough guess, 20 over 19 years?’ Also. One Q did not allow a N/A answer (to do with an employer). I left the answer blank and used the next free format box to add, roughly: Q xx: “My answer would be N/A because I was dismissed from my career due to medically evidenced incapacity to work“ @Tom Kindlon are you able to supply any extra information for @Tia please?
Derek Phebe has been responsible for high quality epidemiological work in ME and was involved in the setting up of the UK ME Biobank and EUROMENE (his idea). From my perspective he is the most trustworthy ME researcher in the UK, entirely committed to a biomedical approach. Unfortunately, the link does not give us any information about other people involved or what the project's objectives are, as far as I can see. I think it would be good to see that. That leaves some uncertainty However, if Latvia is involved it will be Uldis Berkis, who I believe has a similar approach to Phebe's.
It is odd that it assumes everyone is employed – it doesn't even allow the possibility that people are retired, let alone struggling along on benefits. I just ticked 'neither agree nor disagree'.
He wanted to do research asking people with ME what symptoms they actually experienced as that was the only way to find out what the illness actually was. He was refused and the money given to the PACE trial instead.
Ah.. I read that differently. I thought it meant how many of the different types of investigations you had rather than the number of each. So I have had blood tests and naff all else. It is possible if I kept turning up like a bad penny they might have been persuaded to do a scan or something but then it's more likely I'd have ended up being pushed down the CBT/GET route. So it's as much about the balance I sought in protecting myself from the health system and seeking help from it.
Oh I see. That does make more sense! Although I don't think the question's clear. I did have an MRI of my brain and various scans to rule out gynaecological issues. Plus hundreds of blood tests. Can't think of anything else... Never had an xray.
