GCA - Symptomatrix Team. : This organision located... - PMRGCAuk

PMRGCAuk

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GCA - Symptomatrix Team.

jinasc profile image
5 Replies

This organision located in the Netherlands, have kept in touch with 1 now not operating support group and PMR GCA Scotland.

Please take the time to fill in the questions. Every little bit of information helps.

"The Symptomatrix design has now been kept very 'basic', mainly because potential patients may have reading problems and may become distracted by fancy 'cosmetics'.

Again, the Symptomatrix is published on the internet in five languages.

The English version can be found here: symptomatrix-eng.eu

Warm regards from all of us,

Han Kruyswijk (Mr.), secretary"

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jinasc profile image
jinasc
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5 Replies
herdysheep profile image
herdysheep

I can't see from this that were are adding anything by way of information - more for personal use, interesting to see them saying both gca and pmr can be 'cured'.

cycli profile image
cycli

I agree with herdysheep. It seems a useful checklist and could be a practical focus to help a GP understand and for the sufferer to transmit info to them. I would disagree with the migraine entry. It is a different sort of headache for GCA. I had the lot except the 4 from loss of appetite to temperature but I am older than 45+. Seems to me it would be better to circulate all their GP's with this list as a standard approach to help them arrive at a diagnosis.

jinasc profile image
jinasc in reply tocycli

The guidelines for Diagnosis and Treatment of illness in the UK, are issued after approval by NICE. The BSR does issue then direct to Consultants after approval.

In my post I did say this is a research foundation and located in the Netherlands. They have been participating in research for well over 20 years and have some good progress.

Sometimes, we do not agree with what they are asking for but all information has a possibility of being relevant. The more patients that participate can and does make a difference.

Stay well and 10 minutes of your time - could be wasted, but on the other hand it might be important.

Many time over the years I have filled in stuff and thought is this a waste of time - however I learned over the years that "Patient participation" leads to progress.

Onwards to cause and cure - not in my lifetime, but perhaps for those who become patients in the future.

cycli profile image
cycli in reply tojinasc

Will do. I meant their GP's not ours, although some of ours could do with a healthy reminder.

jinasc profile image
jinasc in reply tocycli

In the North East they will do, the details were ready for roll-out then - guess what Covid struck. So it had to be put on hold as the medical people involved in that roll-out were then worked to death. The money for this project is ring-fenced and once we get back (do not ask when) it will be started.

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