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Can anyone advise me on a good ME specalist

Posted , 8 users are following.

kathy1122
kathy1122

Hiya! Im having a problem finding a good specalist i went to the maidestone hospital and they were realy awful they have a bad repreputatIon, its been 6 years still no diagnosis im realy desperate as i meed to get the right benefits and start a little wor.k.

1 like, 14 replies

14 Replies

  • Gizmo1963
    Gizmo1963 kathy1122

    Posted

    Hi kathy, are you going private or through the nhs and which area do you live in or are prepared to travel to? 
    • kathy1122
      kathy1122 Gizmo1963

      Posted

      Hi,l gizmo! Im on NHS and i live in kent but prepared to ttravel around 4 hours from folkestone.

  • paddiwhack
    paddiwhack kathy1122

    Posted

    Kathy I am sorry I can't help you. I hope someone can. I thought two years was a drag but six!!!!! Good luck and take care
  • JulieBadger
    JulieBadger kathy1122

    Posted

    NHS Norfolk and Suffolk ME/CFS Service, kirkley Mill Health Centre, Clifton Road, Kirkley, Lowestoft, Suffolk NR33 0HF. You have to wait for an appointment but they do diagnose at the end of your 40min appointment.  They send out a questionnaire prior for you to complete which they then use to pre diagnose so no-ones time is wasted.

    They then communicate with your Gp on blood tests and possible scans required. As you know M.E./Cfs diagnosis is by eliminating other possible illnesses and via your symptoms.

    Good Luck x

    • kathy1122
      kathy1122 JulieBadger

      Posted

      Oh thankyou thats great help, i was given anti depressants to rule out depression and had a realy bad time i think i have both depression and ME so very difficult to diagnose sshouldn't be difficult really as i have had all the symptoms, and mainly the top ones like flu feeling low immunity pain dizziness slurred speech memory loss weakness and exhausted twitching muscles and gets better when exercise is reduced and Depression and much momore,these people are having a laugh when they say its difficult to diagnose, just look at that list
    • JulieBadger
      JulieBadger kathy1122

      Posted

      Depression is a symptom of M.E./Cfs.  I am so much better now I am on antidepression tablets but those tablets do only work on that symptom of course. x 
  • wknight
    wknight kathy1122

    Posted

    Dr Selwyn Richards in Dorset is the lead for CFS and I was recommended to him and he can certainly confirm if you have the condition but that is when I found the help from the medical profession effectively stopped. I did see a CFS nurse who gave me some pacing plans but that was it.

    I sort of ignored those plans for many years meaning that I went through constant boom and bust. Then I decided that enough was enough and pacing was the only way I was going to deal with this. Now after 15mths I can honestly say that I am the best I have been in a very long time, but I did it all myself. No help really from either the NHS or the private sector.

  • olivetree
    olivetree kathy1122

    Posted

    Hi Kathy

    I feel for you! It took almost 9 years for me to finally get a GP referral to ME/CFS service for Cambridge & Peterborough who finally diagnosed. Like most people it seems I eventually came to conclude that I may have ME by doing my own research when doctors didn't seem to know. One of the  doctors at the surgery I saw was so nasty when I told her I thought I had ME  "Oh, and what do we hope to gain by that?" she said! I was so gobsmacked I could barely reply.  After that I became afraid to keep going back - they would label me a hyperchondriac and never take me seriously over anything! But, of course I had to keep returning out of desperation and eventually got a referral but I had to be extremely assertive in the end.

    Did you go direct to the hospital looking for a diagnosis or were you referred by your GP? If your GP sent you - what reason/department did hje refer you for?

    Unless you go private I think you may not be able to go outside your locality because of the way NHS is funded but happy for someone to tell me I'm wrong.

    I would suggest you go back to your doctors and insist on a referral to a specialist. Print out a lsit of ME/CFS symptoms from the internet and tick all that apply and take it with you to show them.

    Good luck, hope you get the breakthrough you need.

     

    • kathy1122
      kathy1122 olivetree

      Posted

      moreeven though im more assertive i still get the vacant look and dismissive behaviour if you know what i mean, iv been taking high doeses of vit C and was told that it doesn't work even though it is working.
  • wknight
    wknight kathy1122

    Posted

    I am lucky because my GP recognises the condition and has other patients sufferring. We have all been sent out of area to a specialist privately which surprised me because I expected a local specialist. I think its an indication that you may have to travel to find a good consultant.

    However as I said in my previous post, once I got the diagnosis it was down to me to fix the condition there were no magic drugs to make me better

    • kathy1122
      kathy1122 wknight

      Posted

      Thankyou for your advice, nothing wrong with treating yourself goinh nack to nutritionist and a sspecialist.
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