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Appointment with ME/CFS Specialist

Posted , 8 users are following.

emma83518
emma83518

Hi, 

I have an appointment at an ME/CFS centre next week, and was wondering what to expect? Has anyone had any positive results from seeing a specialist? Thank you.

0 likes, 18 replies

18 Replies

  • sally_14743
    sally_14743 emma83518

    Posted

    My husband has 

    he went in feb 2014  was quite nervous .

    the specialist asked his whole medical history and life etc... 

    Really nice then said you have definitely got m.e/CFS .

    she explained how she diagnosed it by using the N.I.C.E guidelines .

    she told him she could offer drugs to help with his particular symptoms. Which she explained to him. 

    But the best thing was to refer him to see the CFS occupational therapists . His therapist comes to the house every 4 weeks she understands the illness and guides him to recover. Very involved lots of stuff to take on board . But he is improving . She doesn't tell him what to do she listens and guides... 

    So all positive . Hope your center is as good ..

    we are in Cornwall . 

    • emma83518
      emma83518 sally_14743

      Posted

      Thanks Sally, I was a bit worried that the appointment might be a dead end. I hope my centre in Sheffield is as good as the Cornish one!
  • jacquie14742
    jacquie14742 emma83518

    Posted

    I found it really helpful for someone to listen and concenttrate on me and rule out other things...mine was an infectuous disease specialist...it was at John Radcliffe in Oxford - he has now passed me onto the clinic for Physio - he is positive about my recovery - hope you have the same experience...just make sure you go in armed with all the things you need to know about, like i wanted to be tested for POTS and celiac amongst other things and he ran those tests on me and sent me for a tilt table test etc
    • emma83518
      emma83518 jacquie14742

      Posted

      Thanks Jackie. I'm not sure what a tilt table test is, or POTS (I'll ask Google!), but I'm definitely going to make a list of things to ask. Thank you smile
    • emma83518
      emma83518

      Posted

      Sorry Jacquie not Jackie! smile

  • alison44235
    alison44235 emma83518

    Posted

    Going to see an ME specialist was a positive thing for me 31 years ago as at last I was diagnosed with something. She ruled out everything else. The only thing is that there was no treatment, so I have lived with it ever since and tried everthing that comes up to help. I cope with resting and pacing myself but of course there are occasions that is not possible.

    But people still do not understand this horrible illness.

    • emma83518
      emma83518 alison44235

      Posted

      Hi Alison, I think that's one of my fears-that they tell me I have it and then don't offer any help! I hope they find a treatment soon that helps end this suffering. Thank you for your reply.
  • Fidd
    Fidd emma83518

    Posted

    I think it's really variable.

    Unfortunately, a lot of them do exaggerate their value and the benefits of their treatments and advice.

    Some of the misrepresentations around 'recovery' are explained here: https://www.youtube.com/watch?v=d_7J5ELjArU

    Really, I find it hard to trust anyone working with CFS in the UK who has not been calling for the release of data for the PACE trial's protocol defined outcomes, to help prevent more patients being misled. When there's such a poor understanding of this condition and what people should do about it, the most important think is ensuring that patients have access to accurate information that lets them make their own decisions about their lives.

    • emma83518
      emma83518 Fidd

      Posted

      Thanks Fidd, I'll have a look at the video.
  • jackie00198
    jackie00198 emma83518

    Posted

    I just saw a wonderful infectious disease specialist who only sees ME/CFS patients. Was very validating. He has a son with ME/CFS and was furious at all medical practitioners who think it's all in your head. One very helpful thing I did before our meeting: I wrote up a history of my illness, including when I decided to take various meds and when certain symptoms appeared. He was very happy I did that. Otherwise, if you wait till the appointment, you might forget stuff. I also wrote down meds and dosages I was taking, and other doctors I was seeing. By doing this, you can optimize your time with the doctor. Best of luck.
    • emma83518
      emma83518 jackie00198

      Posted

      Thanks Jackie, that's a great idea- I literally forget everything at the moment!
  • helen70967
    helen70967 emma83518

    Posted

    Hi Emma

    Things have changed dramatically since I was diagnosed and seeing specialists. Most of the people I have spoken to of late have found the specialists helpful. They seem to be looking at the quality of life for each patient rather than just trying to send you back to work.

    I'm not sure what the treatment programs are these days as I am having to go back through the system myself, because things have changed.

    I hope this has put your mind at ease.

    Helen

    xxx

    • emma83518
      emma83518 helen70967

      Posted

      Hi Helen, thank you for your reply. I had my appointment yesterday (over the phone rather than attending like I was meant to as my stupid immune system let me down sad). I have mixed reservations as the focus of the centre seems to be on pacing, and it was a physiotherapist that I spoke to rather than a doctor. The physiotherapist was lovely but I feel a bit like I've hit another brick wall, I was hoping for more advice on pain management, diet and how I can help myself heal. My notes are being passed on to the doctor at the centre, but I think I got my hopes up too much that this would be the first step to recovery!

      By the sounds of things the centres differ greatly, so I think there are good ones. Maybe the pace talks will help me, I think like everyone I just want to be told I will get better, but I need to accept they can't say this!

      I hope the system works for you smile x

    • helen70967
      helen70967 emma83518

      Posted

      I'm sorry to hear that you didn't get the results you wanted. Unfortunately there isn't an awful lot they can do other than help you to adjust to your illness.

      Please try to remember that they are there to help and not to push you beyond your capabilities. xx

    • sally_14743
      sally_14743 emma83518

      Posted

      Hi Emma

      i know pacing sounds a bit patronising initially but let's be honest they don't know what CFS is all about. They know the possible causes triggers they know the symptoms ,they know what aggravates it . But as to how it works or how you heal? All they know is people recover some to full recovery some to partial. And your ability to handle stress , and to manage energy levels enables your body to heal. So it's down to your body no wonder cure but the pacing is invaluable and is more involved than you think. How many sufferers of CFS lose confidence of pushing themselves as they crash into worse symptoms each time. It's a difficult balance of gentle progression that enables your body to improve and heal . They can guide you to read your bodies warning signs. And the drugs just help the symptoms which help your body again. 

      have they diagnosed you with fibromyalgia which is another illness. altogether don't let them confuse the two. 

      Give it a go . If it improves your life by 25 percent it's worth it .

      feel for you having pain too 😞 not nice not fair ...

    • sally_14743
      sally_14743 emma83518

      Posted

      Hi Emma

      i know pacing sounds a bit patronising initially but let's be honest they don't know what CFS is all about. They know the possible causes triggers they know the symptoms ,they know what aggravates it . But as to how it works or how you heal? All they know is people recover some to full recovery some to partial. And your ability to handle stress , and to manage energy levels enables your body to heal. So it's down to your body no wonder cure but the pacing is invaluable and is more involved than you think. How many sufferers of CFS lose confidence of pushing themselves as they crash into worse symptoms each time. It's a difficult balance of gentle progression that enables your body to improve and heal . They can guide you to read your bodies warning signs. And the drugs just help the symptoms which help your body again. 

      have they diagnosed you with fibromyalgia which is another illness. altogether don't let them confuse the two. 

      Give it a go . If it improves your life by 25 percent it's worth it .

      feel for you having pain too 😞 not nice not fair ...

    • emma83518
      emma83518 helen70967

      Posted

      Thanks Helen, I think I was having a bad week and was just so fed up of having an illness that doesn't make sense and cannot be cured. Until I actually give the centre a chance I shouldn't put it into the 'dead end' pile! Thanks you for your kind words x
    • emma83518
      emma83518 sally_14743

      Posted

      Hi Sally, that is exactly how being told about the pacing felt - patronising! But you're right, they are the ones who can guide, and maybe I'll learn that my pacing is all wrong so it might be helpful!

      I haven't had an absolute clear diagnosis - I developed this after getting a parasite while travelling through Bali. After all the blood tests, an ultrasound and trips to the Tropical disease specialist everything seemed to point to PVF, but no one has said I have PVF or ME - just that it looks most probable! I've looked into Fibromyalgia and although my symptoms are quite similar, I don't think I have all the number of pain points that it lists. The pain I get seems to be just in my legs (I say 'just', that's bad enough!) I'm going to try a TENS machine to see if that helps!

      The ME/CFS centre should be sending me an 'action plan' so when I receive that I'll be a bit more clear on what help there is.

      Thank you Sally - if my life was improved by 25% it would make a huge difference! Thank you for your kindness, I hope your husband is doing well x

       

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