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Specialist referral recieved

Posted , 6 users are following.

sarah1369
sarah1369

I have finally received my referral to a CFS/ME specialist! My appointment is next month and is a group introduction session to the condition and I would imagine an assessment. I'm hoping that they will give a diagnose either way so I know what I'm facing and others (work and partner) will believe me and take me serious!

Not sure what to expect to be honest and a little anxious as been waiting for this referral for a while!

0 likes, 15 replies

15 Replies

  • mary_24931
    mary_24931 sarah1369

    Posted

    Hi Sarah

    i have just finished attending a CFS/ME group and it has brilliant. I have learned a lot of useful tips about managing my condition and have made good friends out of it;we all aim to keep in touch with each other. The introductory session was informal and friendly so don't be anxious. You will learn more about the condition and if it's anything like the group I was in, you will be invited to a twice weekly group for three months. Mine started three months after the introductory session but yours might be sooner. Do you live in the UK?

    The good thing about these groups is being in the company of others with the same condition and it helps you not to feel so alone.

     You will learn how to manage your condition in a gentle and useful way. I'm sad my group has ended! Good luck and don't worry! X

  • wknight
    wknight sarah1369

    Posted

    I am intrigued, first you say you have a referral to a specialist, then you say, It's a group induction session, which is it?

    it is only the specialist who can confirm the diagnosis. Otherwise it's sounds like you are attending a group  session of people who have CFS. 

    When I saw the specialist I went privately, because my GP had run all the tests and sent him the results, all he did with me was ask me lots of questions and then at the end confirm that I had the condition. 

    That at was great because now I knew that was what it was, however, in a way it was a bit of a let down because now what? There is no magic drug to take. I did see a CFS nurse but she didn't tell me anything I didn't already know. After years of struggling I sorted myself out through pacing. 

    Great news on the appointment just don't think its the solution because it's a long road ahead, best of luck 

    • mary_24931
      mary_24931 wknight

      Posted

      In my case the CFS/ME service had received information from my doctor, along with blood tests. Before the introductory group session I had to fill in a very long questionnaire about my symptoms. There is no cure for this horrible condition but learning to manage it is key to coping with it and meeting people in the same boat is such a help. 
  • mary_24931
    mary_24931 sarah1369

    Posted

    One of the most important things I learned in the group was to take regular therapeutic rests to avoid complete exhaustion. Don't do 'boom or bust'! In other words rest after each activity, be it mental or physical. It really does help to do that. You do need to be disciplined to do it though, and I can still tend to keep going for too long! But at least I know what I SHOULD do! They over different tiopics each week so it is a very comprehensive course about managing the condition. Our group leaders told us that people can get actually better from CFS/ME if they manage it properly. 
  • jinny23
    jinny23 sarah1369

    Posted

    Hi Sarah

    I,too, have ME; for 3 years now, gradually deteriorating. I think I'm at my worst today.

    I have waited 12 months for a referral then 12 months on the waiting list. It was , however, all my work. My doctor wasn't in the know!!

    I have learnt everything from having 3 family members with it. They have been rocks for me throughout.

    3 months ago I started visiting clinic but my experience has been different to yours. I meet up with a lady once a month and the programme lasts for 6 months. I have not met anyone else at clinic so different authorities must do it differently.

    I agree totally with Mary and would go further and say that even after you have come to terms with everything, understood the illness ( ???????) and spent hours reading and planning ( when you can ) !!!!......... you still make errors and reflect every time, saying to yourself, next time I will stop myself going into overdrive!! I think because your mind and body are tuned to go that extra mile even though you should not, you do it anyway.

    It' really tough and you have to be so determined.

    I survive at home all day, gave up work, taught for 30 years (miss it dearly) because I have a strong inner determination. I have a wonderful family and hubby and I practice PMA every day, wuthout fail.

    If you could see me, you would think I was from a different planet but I don't care . It gets me through life and, for me, life is too short anyway!!

    Good luck and try everything,

    I did.....

    Jinny

  • Fidd
    Fidd sarah1369

    Posted

    It seems that these specialist services aren't any good at actually improving outcomes (results no better than you'd expect from placebo). Some seem to be ineffective in a friendly/caring way, some seem to promote a lot of inaccurate information. A lot seems to depend on who is in charge as no-one really seems to know what they're doing.
    • mary_24931
      mary_24931 Fidd

      Posted

      I can only speak from my own experience of the group I was in and it was very beneficial to me, run by caring and knowledgeable occupational therapists, plus I had a bonus of getting to know other sufferers and making new friends as a result!  I encourage anyone to attend such a group if they get the opportunity,
    • Fidd
      Fidd mary_24931

      Posted

      I found CFS specialist services to be quite deeply unhelpful, but have also heard some good things from other. Really though. the good that's reported is generally nothing more than what you would get from a support group, and yet many of the people making money from these services are making claims about CBT and GET being a cure, leading to recovery rates of 30-40%, etc. Their exagerations and falsehoods play in to a lot of the prejudices and stigma around CFS and serve to make life worse for patients.
    • mary_24931
      mary_24931 Fidd

      Posted

      I'm sorry your experience has been so negative Fidd but that doesn't mean that everyone else's will be. My life has been enhanced by attending the group and I have learned a lot about how to manage my condition. It was more than a support group and at each session we covered different topics of self management. In the UK the treatment is on the NHS so I didn't have to pay. 
    • Fidd
      Fidd mary_24931

      Posted

      "that doesn't mean that everyone else's will be"

      I did nothing to give my anecdote more weight than your own. Anecdotes are of little value and I certainly recognise this. Even clear examples of quackery, like homoeopathy, often leave people feeling cared for and postive about the therapist (until they realise thay've been scammed).

      That those making money from these services are getting paid by the NHS rather than patients directle does not make the way in which many exaggerate their value and the effect of their treatments any more acceptable. It is still immoral. Even those who are not themselves involved in spinning and misrepresenting the evidence are still failing to speak out against it, and I think that is also a betrayal of the patients they are being paid to help.

  • olivetree
    olivetree sarah1369

    Posted

    Hi Sarah

    It seems everyone on here has a different experience and that is probably due to what the service in any particular area is able to offer.Obviously not universal. I don't know why they haven't assessed you yet but perhaps in your case the assessment will be done at the same time.

    For me, (Cambridge & Peterborough service), after my referral from the GP to the CFS/ME specialist I recieved a detailed questionaire and from that, the diagnosis was made; although I understand if there may be some uncertainity some people have to see the service's doctor before a formal diagnosis is made.  I was then invited to a group educational session which was very informative but unlike Mary's experience it is just a stand-alone session. There was not much help though when it comes down to dealing with family/work and their possible scepticism but at least if you get a diagnosis it's a start. The next step was to complete an activity diary for 1 week, showing what you did and how you felt. On completion you then go on a waiting list for an appointment with occupational therapy.  My appointment will be in a couple of weeks time so remains to be seen what will happen from that as regards to what work, if any, you should be doing and hopefully some support in making reccommendations to your employer to help you hopefully remain employed with any necessary adjustments or not as the case may be.  I'm afraid, after that there will be little else they can offer me by way of on-going support and likely return my care to GP. Great! Not much help expected from them going on track record.

    I would suggest you take your partner with you to your appointment, it's important they are also educated in the way CFS/ME affects you and what they can do to support you.

    Hoping it all goes well for you.

     

  • mary_24931
    mary_24931 sarah1369

    Posted

    The group I was in has given me helpful ways to deal with my CFS and can't be compared to quackery or homeopathy. If I follow guidelines the occuoational therapists taught us, I feel better. The most important of these is to take therapeutic rests and avoid the boom and bust cycle, something I tend to do as I am a driven person and hate being inactive. I hope Sarah, that you won't be put off by negative comments because if you are given an opportunity to attend a similar group, it will be very  beneficial to you. I was sceptical at first but it has been very helpful for me and I do feel better than before the group, as long as I implement the advice given. And now I have new friends who can support and encourage each other so it's been a very worthwhile experience.
    • Fidd
      Fidd mary_24931

      Posted

      People should not be swayed by positive or negative anecdotes, but try to look carefully art the evidence and decide what will be best for them as individuals.

      The only assessment of boom and bust behaviour in CFS found that patients did not engage in this any more than controls: "Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study."

      A lot of unsupported assertions have been made about boom and bust behaviour, and this can be confused by the problems CFS patients have with a fluctuating condition. I am not aware of any evidence that any of the apporaches used at NHS CFS centres do help people with managing boom and bust behaviour anyway.

      People often come away from homeopathy feeling positive about what they have recieved. When we are sick there can be a desire to feel cared for, and get advice, even when the people being paid to provide this do not have any real expertise or good evidence that there advice will bring real benefits. This can cause harm in the long-run and is something I think people should be cautious about.

  • sarah1369
    sarah1369

    Posted

    Thank you for your replies. Im aware CFS/ME is not curable but am willing to try anything that might help. I work in the NHS and know everyone's expericenices are different so will try to keep an open my mind.

    I recieved a letter from CFS/ME specialist with an appointment which looks like a group seminar and it says group induction to CFS/ME but also states about assessment and included 2 sets of questionnaires to fill out pre appointment plus a consent form to join the CFS research. The aim thing I'm hoping for is a diagnose (even though I know there's not really anything to help), just want to know it's not in my head this has been going on for years. My partner and work don't believe me unless it's formally diagnosed! After a period of time off sick I returned to work and reduced my days at work by using Annual leave then After a lot of fighting with work I have recently managed to reduce my hours at work but it's currently only for 6 months (this is with occupational health Envollenment.) just hoping a diagnose will help. I know my partner won't come to this appointment as he's working a long day and won't get it off but will try to get him to come to any others he buries his head in the sand when it comes to ill health despite wirking in healthcare himself.

    Again thank you for all your responses.

  • mary_24931
    mary_24931 sarah1369

    Posted

    Hi Sarah

     

    It sounds similar to my referral. I also filled in questionnaires and am taking part in a research study too. I hope it will give you the answers you need. As I've said, it certainly helped me a lot. Good luck. Mary 

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