ME/CFS European Comparison Survey - SmartSurvey. Professor Derek Pheby 2020

John Mac

John Mac

Senior Member (Voting Rights)
We very much appreciate your help with this brief survey, which should not take you more than ten minutes to complete.
To participate, you should have received a diagnosis of ME/CFS from either a GP or a hospital doctor.
A survey has already been carried out in two European countries (Latvia and Italy), and the authors would like to compare the responses they have received with the position in the UK.
If you would like to receive a copy of the final report when this work is completed, please insert your email address at the end of the survey.
Thank you very much for your help.
Professor Derek Pheby.
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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
 
Tia said:
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.
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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“

Tia said:
I think I'd need more information about who the authors are and how they will be using the data before I complete this.
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@Tom Kindlon are you able to supply any extra information for @Tia please?
 
Tia said:
I think I'd need more information about who the authors are and how they will be using the data before I complete this.
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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's M.E. Linda said:
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“
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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'.
 
Jonathan Edwards said:
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.
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Thank you, that's good to know.
 
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.
 
Tia said:
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.
Click to expand...

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.
 
Invisible Woman said:
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.
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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.
 
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