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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Awareness,education and activities.Please share what you are doing.


Senior Member
I would love to hear what we all might be up to in our own organisations/associations or peoples own towns or cities. How are people are getting involved.
Also any ideas people have to promote awareness or education.
Or just share what is happening in your neck of the woods regarding it.


Senior Member
Please excuse my bad grammar in the above post.

I have been with an affiliated association to our main one so I am in the process of joining our countrywide one.

I am going to do my best to get to the odd meeting our organisation has.
I recently gave an up to date book to my GP on ME/CFS and she and will read it and lend to patients.
I am lucky with my GP I have known her for years and before I got sick. She was not humouring me.

She told me of Professor Tate having a lecture for the third year med school students(she tutors students at the med school) and I told her about Lipkins research and the rituximab trials.
She was genuinely chuffed about it and said well we know in M.E the immune system is overactive.

Our main association has a booklet for GP's to help them in diagnosis and management of M.E
I am going to find out if those booklets for GPs are rolled out to GPs or whether they have to request them. I will see if I can get one to my GP's and see what she thinks of it.

If my GP likes the booklet she might share it with colleagues. I genuinely feel that a lot of doctors have no road map of what to do with us and need help. I think a lot of them sincerely wish they could.

I am going to ask our contact at my local society what she thinks we as patients need to be doing in this area of education/lobbying.
We finally have a closed fb group where people can chat openly together and the numbers in it will grow.
Information from around the world on ME/CFS is being shared to people directly on to patients thru social networking and from the organisation FB pages so that's also really good.

The net is such a great tool for us. I am a firm believer in education as a tool.

Being angry with docs got me nowhere.

Ill see what happens with my plans and I of course will work on it slowly. You never know what good can come from it.
So this is what I am up to.

The information I have gained from PR is the sole reason I have even wanted to get myself involved. I was told M.E had normal blood results by a contact in one of the M.E associations.
Mine are not in normal range in some areas.
Now I know my bloods fit with all the latest research on M.E.

Thanks PR!!!!

So I would love to hear what people are up to with these type of activites.

PS do not poo poo me I will ignore it!!!!!! LOL