• Welcome to Phoenix Rising!

    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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Newbie :)

Messages
6
Location
Liverpool
Greetings and salutations :) recently diagnosed (as of last week) and currently waiting for my appointment for 'group information session' and was wondering if anyone could give me any idea of what to expect!
I'm based in Liverpool and have been told that treatment offered after the initial session could be months which just leaves me feeling hopeless!
Been backwards and forwards to GP since October with fatigue/sleep disorder/IBS/daily headaches/lack of temperature control/muscle aches the list seems endless and everyone just seems to think I'm over reacting and doesn't seem to understand so feeling extremely lonely at the moment, was a ray of light to find this please though would be nice to have a sympathetic ear and some guidance! Much love to you all
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Discotina

I'm guessing from your post that you have been diagnosed with CFS or ME? Since you are in the UK, the treatment you are likely to be offered is GET (graded exercise therapy) and CBT (cogitive behavioral therapy)--both have been found to be useless for ME/CFS.

You might want to look at this thread. There are many other threads on the subject here too. For effective treatment you will likely have to search further. Those in the UK can give you some ideas.

Welcome to the forum. I hope you find helpful information and support here! :)

Sushi
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Sorry yes diagnosed with ME, thank you so much for responding it's greatly appreciated :)
yes agree with Sushi - avoid GET and CBT is only supportive help in some casese

I would try and find someone who knows about POTS ad get treated for that - that helps a lo of our sympotms like brain fog fatigue etc.

It is a very common ME symptom but many don't get tested for it - a good one to get as it proves there is something really wrong with you to sceptics

Good luck

Ally