NHS CFS Clinics

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I have had CFS /ME for about 1 year now...GP has put me on waiting list for a CFS clinic in Oxford, i looked this up and it consists of a Pyschologist and Physiotherapist, which tells me they offer CBT and GET...

Has anyone had success with these type of clinics or am i just wasting my time? It says i might be referred onto a fatigue centre

I have been waiting around 5 months now, so hopefully will hear soon?

I am desparate for help and not really sure which protocol to follow or even to try it myself

Any advice appreciated

Also - im still trying to determine the cause of mine, not sure, I have been tested for mono in the beginning but now wondering if i need a monospot test as i had a paul bunnell test and came up negative

Sore throats and lymph swelling and fatigue / brain fog plague me

Many thanks for your replies :o)

0 likes, 11 replies

Report

11 Replies

  • Posted

    cbt i was sent 1st for my depression and then after a load of test for cfs .

    the cbt for depression did help. the cfs question the girl who done the cbt not understanding as the 1st one - got offered 5 visit pulled out of 2nd after 3 as made my blood boil but this is me .

    Report
  • Posted

    You might be better at looking into Dr. Ashok Gupta's amygdala re-training programme. M.E. is not a phsycological desease, of course people get dpressed because they have M.E.. as it is so dibilitating.

    I tried the re-training programme and it worked, I must admit that I had to stop doing it as I did not have time last year as I was doing a lot of sewing for my daughters wedding now I am reluctant to start again incase it does not work .

    I am really bad at the moment and must start doing the programme again.

    You can get details of the website.

    In my opinion C.B.T. does not help M.E.

    Best wishes

    Alison

    Report
  • Posted

    cbt give a go try u get out for 5 visits - could work for her.

    aiso the re-training programme u on commision pluging it?

    Report
  • Posted

    dont think it will hurt to at least try CBT - what harm can it do? Might help to switch my constant wired brain off and i will try anything if its free
    Report
  • Posted

    cbt is a [erson talking to u over u and how the problem (cfs) gets to u .

    eg . mood/sleepy/fell like poo and other.

    cbt with mine was pointless over cfs but could work for u - there normal a few weeks waiting list for the service .

    its just talking with brain fog tip write down how u are fell , moods triggers . eatting .sleeping hours and any think eise which u might want to ask the service .

    and dont for get my admin fee of £50 ;-).

    Report
  • Posted

    typo ..

    cbt is a person talking to u over u and how the problem (cfs) gets to u .

    Report
  • Posted

    HI Jacquie, I am currently just over half way through GET with a London hospital CFS clinic. I have found it really helpful in stabilising my 'boom and bust' behaviour as they call it. I couldn't walk far at all and now doing 6mins a day from 30 secs!

    Also going to having some CBT but I don't have any personal experience of that yet. For me it was more of a physical problem so they felt GET would be more beneficial..its a lot of collaboration between you and the physiotherapist. I am lucky to have a really good one. I would definitely go for it. cheesygrin Good Luck!

    Report
  • Posted

    Jacquie - Different approaches don't necessarily exclude each other. Like you said, it probably does not hurt to try out CBT; getting psychological support can help with your daily coping. Medication (LDN), on the other hand, will definitely help with your constant sore throat and is likely to alleviate other problems like brain fog considerably. It may affect your sleep at the beginning, and rarely it increases spasticity (stiffness) in legs, but both symptoms will be relieved over time. LDN is usually well tolerated by CFS patients unlike lots of other drugs. I could not be without it.
    Report
  • Posted

    when i go to this NHS clinic, can they actually diagnose CFS? also do they test for other co conditions - like Lyme, Sjorgens Syndrome, Lupus, etc if you feel this might be a possibility?

    I might have to try LDN - ive got it on the back burner at moment as anything that hinders my sleep is not good

    Also - its affording it, i will have to go throgh a private doc etc and i want to make sure all else is ruled out first

    Report
  • Posted

    diagnose CFS is a doctors nightmare they are unsure >>>what it is<<< so there happy to give it a name and send u for cbt to try help.
    Report
  • Posted

    I had various tests done by my GP and various consultants (mostly public) in trying to find a diagnosis over teh years, before going to a CFS clinic in London where I was finally officially diagnosed and there offered treatment to help manage it . cheesygrin JK
    Report
  • Posted

    We delete content if it doesn’t meet the requirements in our Terms & Conditions.

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up