WTH??!!! How long!!

Got a letter today from the CFS team that quack has referred me too, bearing in mind we are now entering month 15 of feeling so bad.....

This is word for word....

Your name has now been placed on a waiting list and the referral passed to our Team Leader who will triage the same.

Pending the referral meets our criteria, you will be offered an appointment as soon as possible.

If you wish to discuss this letter further, please ring the number at the top of the letter.

I wish I hadnt rung the number. I wish I was still sat in oblivion.

I rang as you do, to see how things go etc, and asked how long before I am actually seen for this triage, and told it would be MID/LATE APRIL at the earliest, and then a possible wait of UPTO 12 weeks to bee seen by the consultant for treatment!

WTH is this so called 'health service' coming to?? So it could be 18 weeks before I get somewhere!!! Thats as long as the triage decides it is CFS that is!! I am not pinning any hopes on that one, as one consultant has contradicted the other for flamin months now!!

Needless to say, many a tear has been shed yet again.

So so cant carry on like this, am going to end up losing my job as I found today particularly hard, and have a longer shift on sunday.

Ann xxx

7 Replies

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  • Chemical Angel,

    I am sorry you are so disappointed. What 'has' the NHS come to? People suffering and in pain which you hope the medical personnel know the answer too but a very long waiting list.

    Is it possible for you to have a private consultation? It is an act of desperation sometimes.

  • I am so sorry. It makes me so sad. Stupid system, stupid doctors!! I wish I could help you in some ways.. but I don't know how??

    Is it any way you could get some money for private visit? Money sucks. I struggle a lot as due to 'wonderful' medical care I wasn't diagnosed and treated properly so I couldn't go back to work and I was dismissed on ill health ground. I am on ESA now and have no family to support me so.... I just hope that you will manage to get things sorted finally.

    Hugs

    E xx

  • Hi Edysia

    So glad to hear you sounding a little more upbeat. I've been thinking about you all week. x

  • Thank you both xx

    I have been seen years ago for gall bladder privately, but cannot afford it these days :(

    Its no wonder many of us end up on antidepressants is it?? Having to wait so long in pain.

    Ann xx

  • I'm so sorry to hear of your problems. Many tears shed here over the whole horrible business too. It's probably of no comfort whatsoever, and I don't want to sound negative or put you off, but I don't know if the NHS so called CFS Clinics are any use anyway.

    My GP 'bargained' with me and said he would agree to refer me to the private endo I wanted to see out of desperation, if I agreed to see somebody at the CFS clinic. I readily agreed, as this was the first help I had ever been offered for CFS since I first got it, way back in the dark ages of 1972. It wasn't 'diagnosed' until about 7 years ago - up until then I had Anorexia all over my notes, which it never was. For all I know it might have been thyroid related all along.

    When I got the appointment letter for the 'CFS Clinic' it was in fact for a psychiatric assessment, nothing to do with CFS. When I challenged my GP he said it was 'a way in'. To what I have no idea. Hell probably.

    I think that there is a guy who is very high up in the psychiatric field who has hijacked ME/CFS as a somatic condition - his opinion is that the 'middle aged women' who present with this condition are merely trying to screw the benefit system. His advice to GPs is not to look for any symptoms, because there aren't any.

    I can't remember where I read this tripe, or what the guy's name was, (Whaley, Whalley? Plonker more like) - but it's plain we don't stand much chance up against this kind of prejudice. Yes, no wonder so many people are on antidepressants - to keep us docile and stop us from attacking the so called consultants with our bare hands.

    Sorry, I digress.

    The psych team I saw knew nothing about CFS (had to look it up on the computer), or hypothyroid. After the usual set of questions and minute scrutiny of everything I said or did, even what I was wearing and how I sat, They said I had not got Anorexia (which I knew anyway), but probably it was something connected to the CFS, (no mention of untreated HypoT). They referred me on to the 'Eating Disorder' Team and suggested high doses of Sertraline, which I refused.

    This was in June last year. I saw the Eating Disorder Team several times in hopes that somebody might unearth a nugget of useful information. On all the pages and pages of 'How to tell if somebody has got Anorexia', I was truthfuly able to answer 'no' to every single question. Probably because I do not have Anorexia.

    After a couple of months of this, they decided that I didn't have an eating disorder - it was probably something to do with the CFS. Or HypoT. Oh really??? What a surprise. They would contact the CFS Team and see if I could see somebody....

    Now here's the REALLY hilarious bit - you'll love this. I've had bad relapses in the CFS (or whatever it might be) in the past, and the symptoms, alongside the fatigue etc are invariably almost constant nausea and feeling as if everything I eat is poisoning me. I always lose a lot of weight, and I'm like a stick anyway. It takes for ever, two years sometimes to get back to anything resembling normal, and you never are quite like you were before the relapse. I can't remember what 'well' feels like. And now the HypoT complicates everything times 100 - make that a million.

    So when the levo bit me on the bum and I began to have all the symptoms of a CFS relapse, I quite literally begged my GP to do something, anything, I was so afraid of losing a lot of weight and getting really feeble, apart altogether from the prospect of feeling like complete hell for a long long time.This was last April.

    His reponse was to prescribe more levo which I couldn't take, then when I got desperate enough to pay to see an endo, he sent me for a Psychiatric asssessment. (in June, on my birthday) after lying and saying it was a CFS Clinic.

    Sorry, I'm going round the houses to get to the really funny bit. Between June and December - when the Eating Police finally decided my problem wasn't an eating disorder - I lost about a stone and a half, felt and looked like hell, etc etc. The CFS team now say I am TOO UNDERWEIGHT to see anybody because their 'treatment' is done with graded exercise and I've lost too much weight to do this. End of story, no help from the CFS clinic. Because I've lost too much weight to meet their 'criteria'. Isn't that the funniest thing you ever heard? Either that or another monumental c*ck up.

    Nobody ever listens, nobody ever believes you, nobody ever takes you seriously (My lovely endo excepted). According to the CFS Team - I don't even know if they even exist - I am beyond help.

    On the plus side, I do know of private clinics, one in particular in London, which treats ME and CFS holistically, - physically, nutritionally and psychologically. Their programme sounds fantastic. But it's also expensive and there's no way I can afford it or get to London. But, if you could scrape the money together they could probably help you. They do offer a free 15 minute phone consultation and have loads of free videos online which are quite informative. They do have a cheaper 'distance' type of programme for those who can't get to London or can't afford the more expensive route. Might be worth a look

    freedomfromme.co.uk/

    I think most of the people that run the clinic have had ME/CFS and have recovered. The founder, Alex, certainly has. They seem very knowledgable, well educated in their particular field and compassionate. I keep meaning to take advantage of the free 15 minute chat, but you know what it's like with the 'can't raise the energy-itis' that plagues us all. I'm a little bit afraid that I might find myself signing up for somehing I can't possibly afford! That's just me being paranoid, I have no real reason to think that way.

    So as I say, although it's wretched and appalling that you should have to wait so long to see somebody, try not to be too downhearted as I'm not sure how useful they are anyway.

    I do of course stand to be corrected, and would love to hear from anybody who has been helped by an NHS CFS Clinic. I'm only speaking from my own experience.

    So good luck - I really do sympathise. I lost my career, my home and my first marriage because I couldn't get well or stay well, so I hope something more positive will happen for you. Let us know how it goes.

    All the best

    Kanga xx

  • Hi Kanga, thanks for the reply. I am mid way between Manchester and Liverpool, and my hubby and I are saving hard for me to be seen privately, as he says, he wants his wife back.

    I dont think the CFS team is going to do anything for me, as I push myself to do things as it is, trying to get past the exhaustion etc

    I cannot lose weight, despite eating healthily 90% of the time, and get 'that look' off colleagues at work as I am sat at lunch with a chicken salad and fruit. You know the one, its going to take more than that salad for you to lose weight; look. I am nearly 17 stone :

    I will try and get a private appt with someone, but its going to take time as I only work part time as it is, cannot do overtime as I just dont have the energy, and hubby is self employed.

    Take care hun

    Ann xx

  • Hi Ann

    I don't have to suffer the work thing, as I was declared 'permanently medically unfit' in my 30s and that was the end of that. To be honest it was a relief as I felt so bad, but not everybody is able to do that I know. I just carried on until I couldn't do it any more.

    I feel so guilty at moaning about my weight when loads of others are trying to hard to lose, but it's no fun at the other end of the scale either. I'm under 7stones and I'm 5ft 7, so you can imagine. People seem to think they can make all kinds of personal remarks, like 'you're so THIN', and I feel like saying 'Well thank you for telling me, I was 11 stone when I came out this morning'. It's hard not to say something really rude or just smack them in the face. :-D They don't seem to think you have any feelings, or even a brain. I don't have the energy to socialise anyway, so things get very lonely. This illness just robs you of your life and your personality.

    There was another lady on the forum who went to the same endo as me after I'd recommended her, and she lived in Manchester. The endo is in Leamington Spa - if nothing else, she may be able to help you with your thyroid. Somebody else was kind enough to recommend her to me and I've passed on the detais to others too. She is a thyroid and diabetes specialist, very kind and good and will always listen, and is prepared to try all the tests and alternative meds to try and make you feel better. If you can get the money together for a consultation it might be of some help.

    She isn't any more expensive than the other private doctors people see, and would be a bit nearer for you too - although I appreciate that it would still be a hike. I didn't have to pay right away either - although they take an imprint of your card, it's often a month or more before the actual bill comes in. If you would like her details please pm me. I know it's so hard when money is tight, and we shouldn't have to pay for things that the NHS should provide - but sometimes there's just no other way.

    I've been like you and always pushed myself beyond my limits, but it always catches up with you, even when you think you're OK. I think I'm now paying for the past three years when things were really a huge struggle, both physically and emotionally. But what else can you do when you have to work and do all the other things you need to, and all the things that other people expect of you. Sadly, crossing your fingers and hoping for the best doesn't normally work.

    You take care of yourself too, and if you need details of the endo, please let me know.

    Kanga xx

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