What happens at an ME/CFS clinic?

[wangle99]

My GP has decided to today after one more round of blood tests if they show nothing up they will refer me to the ME/CFS clinic at our local hospital.

As there are no specific tests for this condition I wonder what do they do at the clinic?

Hopefully somebody out there will have attended one :)

Thank you

Sarah

[PositiveAttitude]

Hi Wangle, my daughter had a consultant visit us at home from a specialist ME/CFS unit. (She was too unwell to travel) The consultant we saw was brilliant at telling us how to combat some of the symptoms and gave us a plan to get her on the road to recovery.

Unfortunately there is no test for ME/CFS. It can only be diagnosed by ruling out other conditions.

Have you been unwell for long?

[wangle99]

Hi PositiveAttitude sorry your DD is unwell with this :(

My symptoms have got worse over the last year but previous GPs have tried to fob it off as depression, as the dr I saw today said 'if I had all these symptoms I'd be depressed too' lol I had a whole A4 sheet and if you look at the ME/CFS symptoms I have them all except bowel issues.

What scared me today was I was driving to my friends house and my mind went blank and I couldn't remember where she lived and for a moment I couldn't work out where I was (this is 10 minutes from my house) I phoned DH in a right panic.

I'm not sure what conditions they rule out (I will google) but the amount of blood tests they have done recently on me must be getting pretty much as many as can be!!

Thank you for answering :)

[belleshell]

at my ME/CFS clinic the 1st appoinment was to try make a diagnosis, after that i did a 6 week group session which looked at may aspects of managing ME. i have to say it didnt help me at the time but i was in denial. i have been back and had some 1-1 counselling which has helped and i have finally accepted my ME but i can tell you if pisses me off. I have gone from never sitting still to dreading a walk to the shops, my kids are having friends sleep over tonight andi have had to warn them im not well today......they try to understand but they are kids..so i just hope i can survive throu till tomorrow and see what that brings.

Good luck.

[wangle99]

belleshell it is so hard isn't it. I was at the denial stage when they just put it don't to depression and chronic pain. In fact I sobbed at the pain management clinic when she said I had to grieve for the person I was - and the person I was was at the gym 5 days a week.

I actually feel a relief and as if a weight has been lifted, at last a dr who listens to me and didn't immediately pin it down to depression. Thank you for filling me in on the clinic though :)

[belleshell]

just read my post back i didnt mean it all to be doom and gloom...........life does go on, and somewhere i found the strength to leave a husband who didnt understand, and i am putting me 1st for once...the kids are a delight and are kinda getting used to it.........

The ME clinic really was good, but like i said i wasnt ready and all the advice they gave i give to my own patients on a daily basis...i too was a gym person, on the go 24/7.........today i have tided up a bit and been for a little trip to town....thats it im buggered and will probably pay for the tided up tomorrow, when i should be out with a firend for lunch....still i might not so my advice to myself is one day at a time, which again is hard for someone that plans thins sooooooooo far in advance, or should i say did....

good luck wangle

x

[Chr1stine]

Sorry to hear about the ME. My understanding is that there is a test for ME but the NICE Guidelines won't allow its use. Not so NICE after all.

[CFSKate]

Chr1stine - do you mean the mitochondrial dysfunction test?

[emsies]

The clinic I went to (Wareham) didn't do any additional testing but diagnosed you then put you on a 6 week course. At the time I found it helpful (I too was struggling going from being an active teacher to losing my job :( ) to learn about the illness and ways to manage it.

I'm a lot better than I was but am really struggling as a parent to a toddler - I can't do the regular rests they suggested and can't afford help with childcare which would make a world of difference :(

[magso]

Any one know how I can find a clinic? My GP thinks I have CFS/PVFS but does not know of a local specialist.

[Mandy2003]

emsies - my HV was able to arrange a free nursery place for my DS due to my illness. I was on benefit at the time (unable to return to work after maternity leave).