The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Want advice about local situation- regards the difference between fibromyalgia and CFS

Discussion in 'General ME/CFS Discussion' started by redrachel76, Feb 22, 2017.

  1. redrachel76

    redrachel76 Senior Member

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    Israel
    I should post in the advocacy thread, but want more people to see this because I want advice.

    My CFS friend here in Israel has just written this to me (I translate from Hebrew):

    "You remember the fibromyalgia research I dropped out of because everyone there had just pain and I didn't have the energy for it?

    I am still part the whatsup group for the patients taking part. They haven't got around to removing me. The woman who took my place has just written to say that she is sorry that she didn't get to the first meeting but she has 10 children !!! (religious) and she is a private tutor for high school in the the afternoons and evenings and she looks after her elderly mother who has lots of health problems...."

    Reading that made me more irritated about the local situation than usual....even though I have been through this situation a million times before on fibromyalgia forums and groups.

    In Israel, I guess that most people with CFS/ME get dropped in the fibromyalgia catergory. Or they suffer alone.
    There are only 2 doctors who diagnose it in the whole country and both prescribe CBT and GET.
    As a result, a friend and me set up this facebook page:
    https://www.facebook.com/cfsisrael/?fref=hovercard

    But it is not enough.

    My question is:
    How do I get through to those people who have been dropped in the fibromyalgia group?

    I want to tell them they have CFS/ME and get it checked out.
    We can't do support groups or serious advocacy until I get through to them. Ask that super active woman with 10 kids and she'll say she is chronically fatigued too. So how do I get through to them?

    Is there a succinct MEDICALLY authorised definition of CFS/ME exists that separates it from these energetic fibro sufferers?
     
    Last edited: Feb 22, 2017
  2. charles shepherd

    charles shepherd Senior Member

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    Here is some general MEA information on the overlap between ME/CFS and fibromyalgia which you may find helpful:

    FIBROMYALGIA (FM) and ME/CFS

    My personal view is that there is a considerable degree of clinical overlap between ME/CFS and FM - but they are different conditions.

    So some specialists who see patients with ME/CFS-like symptoms (ie muscle pain, fatigue, cognitive dysfunction etc) will make a diagnosis of ME/CFS whereas others (rheumatologists in particular) may make a diagnosis of fibromyalgia in the same person.

    Some people have what I think is best described as a fibromyalgic component to their ME/CFS, whereas in other cases a diagnosis of pure FM would be more appropriate.

    One important difference is that you have to have pain (often symmetrical/the same on both sides of the body that is in localised areas or 'tender points') to have FM whereas musculoskeletal pain (localized or widespread) is not always present in ME/CFS.

    The situation is clearly unsatisfactory and can be very confusing for patients.

    I cover the similarities and differences between ME/CFS and FM in some detail on pages 106 - 108 of Living with ME (Vermilion paperback available free from any UK public library)

    If anyone in the UK wants to pursue the possible FM component I suggest they ask their GP for a referral to a specialist referral service for ME/CFS, or to a rheumatologist.

    Contact details for all the UK services can be found on the MEA website: www.meassociation.org.uk

    If more help is required with pain (regardless of the diagnosis) and if the GP cannot help another option would be to ask to be referred to a hospital pain clinic

    Recent paper on the use of acupuncture, which may be worth a try, in fibromyalgia:

    http://aim.bmj.com/content/early/2016/01/27/acupmed-2015-010950.abstract

    FM tender point map:

    [​IMG]


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  3. TrixieStix

    TrixieStix Senior Member

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    My experience has been that every neurologist, rheumatologist, and primary care doctor I've seen never recognized what I was describing to them as being "Post Exertional Malaise". It was after discovering the term myself that I realized I had been describing exactly that. Even after finding the word to describe this debilitating symptom (PEM) and telling the rheumatologist about it, she just looked at me like I had said nothing at all and never responded. The rheumatologist simply diagnosed me with Fibromyalgia even though I have severe ME/CFS and am almost totally housebound/bed/recliner bound. What I was describing to the rheumatologist as my current symptoms and level of disability is NOT at all normal or found in Fibromyalgia. I had to diagnose myself and then educate my primary doctor myself by showing him the IOM (institute of medicine) report and diagnostic criteria. And then I had to seek out an ME/CFS specialist on my own because my primary doctor although he also agreed I met the criteria for ME/CFS he had no idea what to do for me. I then had to seek out an ME/CFS specialist myself.

    I think that she may have better luck with a primary doctor than a rheumatologist in terms of figuring out if she meets ME/CFS criteria or not. The IOM report was intended to be used by primary doctors to aid in diagnosis. The 22 page "Clinician's Guide" is what I printed out and gave to my primary doctor.
     
    redrachel76, Webdog and Zombie_Lurker like this.
  4. BeADocToGoTo1

    BeADocToGoTo1

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    The following book was an eye-opener and will help explain so much, including the cause of PEM in easy to understand terms. There is a tiny section on Fibro in it as well. I wish I had had this book years ago and recommend it to every one of my doctors as well; many whom sadly need educating by the patient.

    Diagnosis and Treatment of Chronic Fatigue Syndrome - second edition by Dr Sarah Myhill
     
  5. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Hanna likes this.
  6. redrachel76

    redrachel76 Senior Member

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    Israel
    I am not trying to inform a woman than she has CFS.

    I asked how to reach the people with CFS misdiagnosed with only fibromyalgia. They are radically different in energy levels and post exertional malaise. (I don't think primary fibromyalgia even has PEM!.)

    Please @TrixieStix
    I can't find the IOM report Clinicians Guide.
    If you have any hints to help in google, or better still, the website, please tell me.

    Thank You charles shephard.
     
  7. TrixieStix

    TrixieStix Senior Member

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