I should post in the advocacy thread, but want more people to see this because I want advice.
My CFS friend here in Israel has just written this to me (I translate from Hebrew):
"You remember the fibromyalgia research I dropped out of because everyone there had just pain and I didn't have the energy for it?
I am still part the whatsup group for the patients taking part. They haven't got around to removing me. The woman who took my place has just written to say that she is sorry that she didn't get to the first meeting but she has 10 children !!! (religious) and she is a private tutor for high school in the the afternoons and evenings and she looks after her elderly mother who has lots of health problems...."
Reading that made me more irritated about the local situation than usual....even though I have been through this situation a million times before on fibromyalgia forums and groups.
In Israel, I guess that most people with CFS/ME get dropped in the fibromyalgia catergory. Or they suffer alone.
There are only 2 doctors who diagnose it in the whole country and both prescribe CBT and GET.
As a result, a friend and me set up this facebook page:
https://www.facebook.com/cfsisrael/?fref=hovercard
But it is not enough.
My question is:
How do I get through to those people who have been dropped in the fibromyalgia group?
I want to tell them they have CFS/ME and get it checked out.
We can't do support groups or serious advocacy until I get through to them. Ask that super active woman with 10 kids and she'll say she is chronically fatigued too. So how do I get through to them?
Is there a succinct MEDICALLY authorised definition of CFS/ME exists that separates it from these energetic fibro sufferers?
My CFS friend here in Israel has just written this to me (I translate from Hebrew):
"You remember the fibromyalgia research I dropped out of because everyone there had just pain and I didn't have the energy for it?
I am still part the whatsup group for the patients taking part. They haven't got around to removing me. The woman who took my place has just written to say that she is sorry that she didn't get to the first meeting but she has 10 children !!! (religious) and she is a private tutor for high school in the the afternoons and evenings and she looks after her elderly mother who has lots of health problems...."
Reading that made me more irritated about the local situation than usual....even though I have been through this situation a million times before on fibromyalgia forums and groups.
In Israel, I guess that most people with CFS/ME get dropped in the fibromyalgia catergory. Or they suffer alone.
There are only 2 doctors who diagnose it in the whole country and both prescribe CBT and GET.
As a result, a friend and me set up this facebook page:
https://www.facebook.com/cfsisrael/?fref=hovercard
But it is not enough.
My question is:
How do I get through to those people who have been dropped in the fibromyalgia group?
I want to tell them they have CFS/ME and get it checked out.
We can't do support groups or serious advocacy until I get through to them. Ask that super active woman with 10 kids and she'll say she is chronically fatigued too. So how do I get through to them?
Is there a succinct MEDICALLY authorised definition of CFS/ME exists that separates it from these energetic fibro sufferers?
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