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Autoimmune disease

CFS/ME

10 replies

Jux · 02/05/2018 16:59

Am I in the right place for this?!

DD had an appt to see a consultant at a CFS/ME clinic yesterday. No consultant! Consultant had left the NHS last week, and apparently there are no others now round here, not NHS anyway.

Does anyone know of a private CFS/ME consultant in or near East Devon/West Dorset, and any idea how much they might charge?

Thank you.

OP posts:
Missingstreetlife · 03/05/2018 10:51

That's a bit rich! There is a support group in your area. Try action for m.e website. Good luck and beware of graded excercise

Solo · 03/05/2018 10:56

Sorry Jux that's crap! I have this disease and was drawn to your thread but, I'm London way so, don't have anything for you.

Why do you say beware of graded exercise Missing? I find any amount of exercise beats me and could never do their 'graded exercise' as per instructions. It knocked me out for weeks at a time.

Solo · 03/05/2018 10:57

I mean, that's crap for you and your Dd.

QueenofWhatever · 03/05/2018 11:23

Can you get to Bath? Esther Crawley at RUH is the leading clinician for this. She recently published the SMILE trial for children and young people.
www.bristol.ac.uk/social-community-medicine/people/esther-m-crawley/index.html

There’s also TED talks by her, worth watching.

Disagree about graded exercise. That and CBT are what got me better (no, not cured). I hate the scaremongering about CFS.

Solo · 03/05/2018 11:33

I did CBT and tried many times to do graded exercise and nothing worked and made things worse in fact. I now just manage the condition. It's been there for a long time.

Missingstreetlife · 03/05/2018 12:24

That's why solo. Esther Crawley is a children's doctor, won't see adults.
Don't want to get in an argument about excercise, it may be good for fatigue but not for m.e. Trouble is doctors don't know the difference.
Google me trust, dr worthley may do you a phone consultation.

Missingstreetlife · 03/05/2018 12:32

How old is dd, if under 18 should be seen by paediatrician

Jux · 03/05/2018 13:34

Thank you all.

DD is just over 18 so paed is out. We might be able to get to Bath, but as Dr Crawley is paed there'd be no point Sad

We are near Exeter, can get to Bristol by train (though depending upon when, dh could drive her there). She has friends in Gloucester, and we have family in Dorset, Herefordshire, Warwickshire but I would be wary of asking if we could stay with them.

We could get to London and back in a day on the train.

I was hoping there'd be a few good specialists a bit nearer us though! Paying fares/petrol, overnights on top of private consult fees may take it out of possibility for the mo, and I was hoping to get her a dx like NOW if I could!

Tell me more of this person who might be able to do something over the phone, Missing if you don't mind. Have you had much contact with them?

Googling the ME Trust now.

OP posts:
Jux · 03/05/2018 18:15

Missing thank you for your kind pm. I have replied (it may sound slightly abrupt but that's because there are quite a few people here now all wanting my attention so I'm

OP posts:
Solo · 03/05/2018 22:27

I wish your Dd well Jux and dx'd with something that can be treated easily. M.E/CFS is not funny and is invisible.

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