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CFS/ME Introduction and Resources

Posted , 22 users are following.

Emis_Moderator
★M

This is a discussion where users can post their signs and symptoms, treatments, history etc. There is also a list of useful resources links etc below. If any user has any suggestions about additions to this please send me a Private Message rather than replying here or trying to post links in this thread. Any links added will have to conform to the forum rules.

Patient leaflet on CFS which includes a tab for Clical Trials (second link).

https://patient.info/health/chronic-fatigue-syndromeme

https://patient.info/health/chronic-fatigue-syndromeme/clinical-trials

PatientPlus article on CFS written for GPs. Includes references to more in-depth articles including NICE Guidance.

https://patient.info/doctor/chronic-fatigue-syndrome

The Hummmingbirds` Foundation for ME.

http://www.hfme.org/

CFS/ME - A Primer for Clinical Practititoners from Members of the IACFS/ME.

http://www.rmcfa.org/f/IACFS_Primer.pdf

Other groups in the forums that may be of interest.

Fibromyalgia https://patient.info/forums/discuss/browse/fibromyalgia-syndrome-909

Osteoarthritis https://patient.info/forums/discuss/browse/osteoarthritis-1632

Rheumatoid Arthritis https://patient.info/forums/discuss/browse/rheumatoid-arthritis-1968

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  • andrew22534
    ★5 Emis_Moderator

    Posted

    Thank you very much, very helpful as a one point note, can we also add links to uesful services onto here too. if they are advisory or scientific reports and not advertising for various clinics? 
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  • Beingella
    ★3 Emis_Moderator

    Posted

    I have not been diagnosed with CFS/ME because my doctor doesn't believe in it. It's very likely I have it.

    Symptoms

    ~Severe fatigue

    ~headaches

    ~joint pains

    ~nausea

    ~anxiety

    ~low blood pressure

    ~jaundice

    Ive been tested for celiac, Crohn's, parasites and cysts then my doctor decided I was 'lying' because he didn't find anything.

    History

    ~Anxiety

    ~Irritable bowel syndrome

    Treatment

    ~swimming physical therapy 

    ~antidepressants

     

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    • pam_87693
      ★5 Beingella

      Posted

      Hi depending upon your why you have low BP and nausea and headaches your doctor should be made aware of this? Do you have EDSIII called hypermobility syndrome this could cause most of your problems. If not you may have an autoimmune problem. Has your GP ever tested your bloods to see if they are normal. If they are and your inflamitory markers are normal then explain you are double jointed and that could be the cause of your anxiety. Swimming will help if you are double jointed as you need to stay active. I suggest your ask him to refer you to rheumatology if you are. They will help you to understand the best medication for your problems. Antidepressants are good but you do need to have a blood test to ensure that you have nothing else going on other than being double jointed. 
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    • Beingella
      ★3 pam_87693

      Posted

      Hi! My doctor doesn't really want to test me for anything as he sees me as a liar. He's the sort of guy if you can't find it in the blood test; you're faking. Honestly, I really don't want to go back. I'm double jointed but he never mentioned ehlers-danlos. He knows I have postural low blood pressure and made me do an ecg; but no stress test. 
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  • mitty999
    ★3 Emis_Moderator

    Posted

    Hello there !. Thank you for corecting my spelling. I appreciate this.

    Another important site is the Stonebird and The Grace Charity

    Many thaks.   Mitty.

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  • sally19402
    ★1 Emis_Moderator

    Posted

    Hi, I am a Kiwi who has suffered chronic fatigue symptoms since my daughter was born 24 years ago. They have worsened with menopause. I thought I had found my answer when my B 12 was found low, but supplementation didn't help. Then my thyroid functions changed to abnormal, with thyroid antibodies. I started on levothyroxine a year ago and my symptoms got worse, more brain fog, more fatigue and more joint pain. After researching on the net I discovered that some genetic deficiency of deiodinase enzymes exists in some people, and can be turned on by pregnancy or viral illness. My Mum developed ME in her fifties before me, so this seemed a possibility. This causes inadequate conversion of thyroxine into the active hormone T3, blood thyroid functions can appear normal. Porcine thyroid extract being a good treatment. I hunted for a GP who would prescribe this and started six weeks ago. My brain fog cleared immediately, my joints stopped aching within a week and my energy levels are improving in leaps and bounds. I wonder how many people have this condition. There is a genetic test for these genes now available in UK (google deiodinase genetic test). 
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    • gerry89112
      ★1 sally19402

      Posted

      Hi Sally,

      i have had fatigue 15 yrs. housebound and bed bound a lot of the time. I'm 59. It started gradually but progressed gradually .

      i get no refreshed sleep. I use sleeping pills but they don't help ,

      Any ideas would be much appreciated.

      Gerry

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