ME/CFS clinic

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I went to the clinic yesterday, the third time I have been and the third time I hve come away really angry and stressed in fact I have been shaking since yesterday. They have caused me so much stress I thought they were supposed to help. This is the clinic in York. The first thing was they sent a letter to my doctor with 16 errors in it and two pieces of information i did not want to be disclosed to my doctor. Next she was very patronising and third I gather that if i carry on going it will take 8 months of just concentrating on the therapy and doing as I am told with no gaurantee of getting much better. Giving up what I enjoy doing etc, I think this will send me into a deep depression and I will jus not want to go on anymore. So no no no to this and I will manage my ME myself. I have had it for 32 years and coped with pacing and resting. The thing is if I would just be given more detail of what it involves at the clinic I could make an imformed decision as to go ahead or not. i really do want to get better.

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  • Posted

    Sorry you're having this experience with the clinic. It's easy for those in the medical profession to be patronising and uncaring because they don't have to deal with this illness. If you have coped with pacing and resting I think that's great, because those are two of the main strategies recommended for dealing with ME/CFS. With this illness, I don't think any therapy can guarantee a positive outcome. My current doctor, who is a foremost expert here in the U.S., has tried me on one supplement and two different drugs. They have benefited some of his patients but certainly not all. And so far, not me. I've found that lifestyle changes, more than anything else, have helped me to cope. Like you, I rest and pace myself. I avoid caffeine, alcohol, and sugar. I eat healthfully, mostly a plant-based diet. But I do love to eat, so I don't deprive myself of good-tasting food.  I do my best to stay calm by meditating every day. I support ME/CFS research with donations. Like you, I'm a long-term sufferer. It's so difficult having one's life so dramatically altered. I look at the way the terrible AIDS epidemic was curbed by helpful drugs, and wonder why the same hasn't been done for us. Sometimes I think we're invisible, and sometimes I feel like I'm disappearing from my own life. I'm grateful that I have a supportive husband, but it's still difficult. Take care, Alison.
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    • Posted

      when I read your reply, twigged to the part where you say you feel like you are dissappearing from your own life.  It made me sad, not only for you but for me as well.  That is exactly how I feel.  I am disappearing not only from my friends and work, but from my mind.  I feel so tired and hurt so much, that sometimes that is all that I am.  Tired and pain.  I can't read, or watch TV, or talk to my friends.  And I end up sleeping so often that I feel like I am sleeping my life away.  It's weird, but I never thought of it like I am disappearing from my life, but you are right.  That is exactly how it feels.  Hugs from me.
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  • Posted

    "I gather that if i carry on going it will take 8 months of just concentrating on the therapy and doing as I am told with no gaurantee of getting much better."

    tbh, I'm kind of impressed that they were willing to be honest about how useful they are.

    It's sadly normal for CFS clinics to mislead patients about treatment efficacy.

    Also though - they're not the boss of you. You don't have to do what they tell you, ever. You should proceed however you think best, being aware of how little good evidence there is that following their programme will really help you.

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  • Posted

    Hi Alison,Thats just awful, how frustrating and soul destroying for you!. Youve made the right decision in saying no to this ridiculous 'treatment'. To be honest the CFS clinic for me, was pretty useless and it also made me incredibly frustrated and upset at times too. The one I went to taught us classroom style about pacing (doesnt always work with everyone-didnt with me), amongst other thing, and a half day ever week for 8 weeks (in the mornings!) which wiped every single one of us on the 8 week 'programme' out for the following week after. The programme is run by Physiotherapists not CFS/ME specialists and at one point one of the Physios wanted us to bounce on a large exercise ball(??)-of course none of us were willing- so she said she'd bring it back the following week instead! Grrr (we didnt get on it then either!) . No idea these folks about M.E. I suffered the 8 week programme and 6 sessions (spaced 2 months apart!! with a Psychotherapist (I opted out of the CBT) The Psychotherapist also wasnt trained in CFS/M.E. I hung on in the hope it might help-Nope.Just like you, it tore my soul apart instead. Youre more than welcome to private message me and I can share with you what I have done since which has helped me xx
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  • Posted

    Hi Alison;  I can relate to you, too.....I did not go to a CFS/ME clinic, but was referred to a Pain Clinic, many years ago, and Yes, it too was "a waste of time".........no Idea what they were supposed to be helping us with........and as you say, when the Physios appeared....it was all to do with Posture, Posture and more Posture...........heck, what did they think was wrong with us????   Very much so a Big Waste of time, and Energy....but it seems the Powers That Be, when it comes to, Insurance claims/benefits, They Have to Prove that we have done Everything that what they say is essential to know that we Can't be Cured (go back to work)..........Red Tape!!!................rolleyesBron
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  • Posted

    That's horrid.

    In fact you are the boss - plus they are probably paid by results, so should listen to your feedback.  You can also use the PALS system to complain.  I found one of the PACETrial clinicians guides.  Somewhere in it, it tells the therapist to listen to each patient to see what they like doing and to try and use that to help you get better.  So for example, if you like sitting in the garden and pulling up a few weeds, growing seeds etc, they would ask you to do that for say five minutes a day for a month, and then increase it to six minutes.  Or if you like doing arm exercises with say Dumbbells, you might do five little lifts a day - then increase it in a month.  Whether they will actually listen to you telling them that sometimes you can do it better than others probably will depend on the particular therapist.

    It doesn't help any of us, but they are probably trapped in a system that only allows them to think that graded exercise increases or CBT helps and that setbacks are your fault for overdoing it.

    My clinician decided that I kinda knew myself better than their program so it would be better for me if I chose not to be put into a group at all.

    I was told right at the start, by a different consultant, that mental wellbeing with such a debilitating condition as CFS, or other debilitating conditions, can become a real issue.  I think that's true, it can lead to loneliness and friends not understanding, let alone the daily boredom.  So I took up some new low energy hobbies.  Formerly I was a very fit cyclist, now I knit socks!  And watch TED lectures, Netflix.  Family and friends try to take me out to sit in the car and see something different than the four walls of our house.  Friends understand that if they come round for a chat or dinner, I may well have to lay on a sofa, or even the floor - and they just deal with it.

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  • Posted

    Wow, alison, that sounds awful.  I am so sorry you had to go through that.  I hate this disease so very much and hate that no one can do anything about it.  I will be thinking of you today and wishing you well.  p.s. even if you want to, you can't kick or bite the medical staff. They consider it rude.  cheesygrin 
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    • Posted

      I am not going to go back to the clinic and I think I might jus tell them why. The fact that it is doing me more harm than good would be a start. The therapist still hasn't sent me a print out from the last session, she said she would so I could make and informed decision as where to take this forward. 
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    • Posted

      Many places allow you to take a friend, at least when seeing a clinician or therapist one to one.  Can you do that?  I always did.
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    • Posted

      Its hard when professionals say they will do these things and don't. Its bad enough having such an exhausting condition without the extra sense of being let down too. I have memory issues with my cfs/me which means I forget to complain! I hope you at least get an apology from the clinic.
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    • Posted

      They are meant to send questionnaires to patients to measure how useful they were -  I wonder if they might skip sending them to you. Would be interestng to know if you did/did not get sent anything like this.
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  • Posted

    So sorry Alison that you had a bad experience yet again at the ME clinic. Like you I've had it for 32 years. In Liverpool I was sent only once to a group session and they told me very little that I didn't already know. When I asked why does it keep recurring in between months of feeling well (in the past - not now!) they had no answer. I felt they were patronising and implying that it was probably my lifestyle and life choices that were making me ill - in other words it was all my fault. So I sympathise with you and tell you you're not alone and to keep resting and pacing as you have been and probably avoid the clinic.

    Take care!

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    • Posted

      Thanks for you reply It really helps. I shall never go back to that clinic again I feel they have really made me worse but also very angry that the adrenalin has helped in a funny sort of way. I really feel I need to complain to someone about the clinic but it might just make matter worse for me. They might send more untruths to my doctor, they should not be allowed to so called help people. Are some people so gullable that they can't see through what they are trying to do. i hope this makes sense I am so exahusted I have got my daughter staying with the 2 children and three dogs and we have had a day out and then I had to come back and make tea. No rest at all I dread how bad I am going to feel tomorrow. Best of luck to a fellow sufferer of 32 years.

      Thankyou everyone for your replies I shall try and reply to each when I have a minute when my daughter goes and after all the cleaning up I will have to do when they are gone in 3 or 4 days time!!!!

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    • Posted

      Hi there Alison, I hear what you are saying about not wanting to complain to the clinic. A friend of mine had a similar experience with her letter to the doctor from the clinic here. She chose to complain to the clinic. In addition, her original therapist has been off sick for several months. Her sense of the service is similar to yours in that it was unhelpful and made her angry. Similarly, my therapist at the clinic, is also off sick! However, my experience is that I have been listened to and my doctors letter appropriate to what was discussed. It seems pot luck as to whom you get? I also feel that we who have cfs/me, are helping to shape future help for sufferers through the questionnaires we filled out at the start as so little is still known about the condition. Hope this is helpful to you?
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    • Posted

      It has happened again I have been sent a letter from my therapist. This letter has been sent to my doctor. She did not say she was going to this.

      It has a lot of untruths in it again, I am so so angry that I am definitley going to do something about it this time. It is a pity there is not the equivalent of trip advisor to complain to or maybe there is. I am also going to send an e-mail to the so called therapist, I won't say this to her but I really think she should be staying at home looking after her baby than making my life a misery. Things are hard enough with out this sort of rubbish going on, something else to deal with. Sorry for ranting I am so so angry again. I cannot go on writing now as so exhausted and shaky.

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    • Posted

      Hi Alison,

      So sorry to hear you have been let down again by the service that is meant to be there to support you! I'm not surprised you're angry. I'd make sure you write in how this has affected you, like you say here-you are shakey and exhausted. My friend who did put in a complaint, did so to the service manager as far as I know. Maybe an idea to change therapist?the same friend had a physio that was also not suitable, i suggested she change,( we all still have choice even when we are ill it can be easy to forget this) she received much better advice after. Also, I'd explain your feelings to your doctor when you next see them.

      Hope you feel less shakey with this soon. Really frustrating stuff.

      Best wishes

      B

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    • Posted

      I have just sent an e-mail to my therapist to tell her exactly how I feel about these letters and suggested that she runs letters past her clientsmbefore sending them to thir doctor so errors do no accur again as in my case.

      i am going to tell my doctor when i can get an appointment. I did try 3 weeks ago but he was on paternity leave and then a week ago and they could not fit me in. Well now I have two letters to complain about.

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    • Posted

      If you are thinking of making a complaint, it is often worth saying as little as possible at first, and getting an understanding of how their system works. Sorry to hear about another bad experience at these places.
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    • Posted

      Hi Alison,

      Hope you get an appointment soon as you rightly say, its two letters now. I also hope you at least get an apology from the clinic! Infact, why two letters to the doctor? I'm not 100% certain how these things work. I just know in my case I got to see the letter sent to my doctor and not had a second one. My next clinic appointment is in October though as therapist has been off sick. I try to take someone with me but not In the room. I did however take someone in the room on 1st session as my memory is terrible. I noticed that you said she hasn't sent you the notes from your last session to make an informed choice? Have you received these yet? As if she said she'd do that and she hasn't, she's not fulfilling her side of the bargain. Again, more frustrating stuff to waste energy on that isn't in abundance!

      How are you feeling for sending the email to the therapist? Hope you feel some relief.

      B

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    • Posted

      I now have two letters to talk about with my Doctor so I keep putting off making the appointment as am not feeling up to it at the moment.

      I have also written another e-mail to the therapist and put it in draught  and am going to think about it a bit a longer before i send it, I wrote it august 8th (a reply to her response to my first e-mail)  I have still not calmed down yet about the impossible situation she has put me in.

       She has not really apologozed just said this and that is their policy etc. I  think she is in the wrong job and really should be staying at home looking after her baby, but I would not say that to her. It does make you wonder though, she goes about things in totally the wrong way, I don't think her mind can be on the job. 

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    • Posted

      Hi Alison,

      It could be that she's hiding behind procedures and not really listening to your concerns? Its understandable as to why you are still upset regarding the position you feel in with the letters she has written to your doctor. Hopefully you'll feel upto speaking about your concerns with your doctor soon. Its extra stresses like this that don't help with this condition! Do it in your own time.

      B

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    • Posted

      Also, you may be right, she may be in the wrong job or have her mind elsewhere, you could ask the service for a different therapist. After all, its supposed to be there for people with this condition! its such a shame you're having such a negative experience with them.

      Best wishes

      B

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    • Posted

      Hi Alison,

      Just wondering how it went for you? Did you discuss things with your doctor or the cfs/me clinic?

      Best wishes

      B

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    • Posted

      Thanks fo asking. So far I have not been able to get an appointment with my doctor which is very annoying to say the least, I am going to try and book one on tuesday for two weeks time. As for the clinic I sent an e-mail to the therapist pointing out everything I thought about the way I had been treated and  week later I got an apology from the manager who said i could ring her any time, so I rang her on Monday she was very good and explained to me what goes on the workshop etc, something that my therapist just refused to tell me. I did say  to the manger that after the treatment I had had at the clinic that i did not think i would be able to go back. She said I could ring her any time to discuss things. She also said they were going to have a meeting (which would have been yesterday) to discuss all the points I had made and would change things especially the way they went about sending the letters to the doctor, so i have done some good for others in the future, but as she said to me the damage is done as far as I am concerned.

      I am going through a very hard time at the moment, my best friend (the only one who truelly understand my M.E.) has been in hospital twice in the last 3 weeks, she has cancer and we think that she does not have long to go. I spoke to her last saturday and she seemed very positive that was before she went in again (this has happend a lot in the last 5 years) I sent my invites for my 70th on wed. before I knew she had gone back into hospital. I really don't know what to do. I will cancel the party I think depending on what happens. I also made a cake for a competion just to take my mind off my friend and some leaves on it broke on the way to display it, I got really upset. Things I feel are just piling up. The only thing that matters in all this is my friend.

      Sorry to keep going on.

      When and if I ever get to see my doctor I shall let you know the outcome. I am still very angry about it and feel that I always will be. My husband had an idea that maybe they could destroy the letter I also think tht the therapist should write to my doctor and apologize for all the mistake she made, and put it right. 

      Alison

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    • Posted

      Hi Alison,

      I'm so sorry to hear about your friends illness and how ultimately difficult this is for you. Making the cake sounds a fantastic way to forget about things for a while and how disappointing the leaves breaking would be in normal circumstances. With your friends ill health, Cfs/me, thinking about the party-what alot to deal with. I know it may feel

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    • Posted

      Like everything is piling up, I hope you are able to talk with your friend and that maybe your party Is something for them to look forward to? It seems such a hard time for you with all this and i send you my best wishes and to let you know that i am thinking of you. So, with all this going on, I think you have done amazingly in regards your complaint to the clinic. Its a shame that it seems It wont benefit you so much but, seems that it will change future practice. I also hope that you can get to talk to the doctor about what to do about the letters.

      Make sure

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    • Posted

      Thanks for your support. I hope I can talk to my friend soon.We do text each day. At the moment she is waiting for results of a scan. She said she did not know what to say about the invite. She sometimes keeps away from people due to her non existent immune system. I am sure she will make it if she can. I am afraid I am just doing too much at the moment just to take my mind off all this worry. Just about to have an afternnon rest, Will stay in bed for at least two hours and have a sleep as well I hope.
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    • Posted

      Glad to hear you are resting in the knowledge that you are doing too much at the moment to take your mind off things. Cfs/me is such a pain as life is tough enough these situations. Rest whenever you can Allison to attempt to recharge your battery right now.

      B

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    • Posted

      I don't think my friend has much longer and we are supposed to be meeting up with our daughter today for lunch an hours drive away and I will need to get back for my rest and she has changed the time for meeting up half an hour later, half an hour means a lot to me. I just don't know whether to go or not because of my friend, I want to see her but don't like to ask I am hoping that I will be asked to go. Her sister and daughter visited her yesterday, but they ae family and I don't want to butt in. I know what it is like. When my father wa dieing a friend of his turned up and I wished he would just go. Also the same happened when my sister was dieing and I turned a friend of hers away, she did not see her alive again, I felt really bad about that and apologised to her friend at the funeral. It is so difficult. 
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    • Posted

      Hi Alison,

      I hope your day didn't turn out too stressful. Regarding your friend could you ask her family if they mind you going. Maybe If you could give them a time? It can be so hard when people are ill or dying to get it 'right' as it were-there are no blueprints. Follow your heart. Could you talk to yr friend on the phone perhaps even? Be gentle with yourself and try not to over do things.

      B

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    • Posted

      Hi Alison,

      I did type out a reply a few days ago but It seems to have got lost somehow on here?

      I know what you are saying regarding your friend and not wanting to intrude, is there anyway you could ask their family and suggest a time or date you could be there? Maybe even suggesting how long you might stay? You could tell them you don't want to intrude. It is really difficult when people are extremely ill or dying to try to get it 'right' there are no blue prints for these kind of things.

      Regarding your daughter and changing times etc. It is hard to tell people who aren't affected by cfs/me how things like half an hour mean alot. I feel myself that writing things down to people helps. Letters can seem old fashioned for people these days but, seem more effective? Tell her how you love spending time together but need the rest too and that you are trying hard to keep the routine you have. Hope that helps?

      I also hope you are managing to balance things for yourself at this difficult time.

      Best wishes

      B

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