Wednesday 12 February 2014

Fibro and CFS, misunderstood disorders?


I originally wrote a blog post called "Fibro and CFS, mental disorders? WHO must rethink" in response to an article claiming that "The World Health Organisation (WHO) is due to "label Fibromyalgia and ME/CFS mental and behavioural disorders".

This article has since been withdrawn due to inaccuracies. WHO has clarified that there is no intent to classify these conditions as such in ICD 11. However an image of the article is still available here if you wish to read it.

WHO tweet: Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11

It remains the fact though that a large part of the medical community believe that these conditions are primarily psychological in nature. They also have a particularly bad press with the general public. This is concerning due to the seriousness these conditions can have.

Rather than remove my blog post entirely I have therefore simply amended it by removing any references to today's inaccurate WHO article, as it is otherwise still relevant to these problems.


I am not an expert on fibromyalgia, ME and CFS and the differences between these 3 conditions. I am aware though that a great deal of research is currently ongoing and there is more and more evidence arising which suggests that these are physical illnesses (eg impaired pain receptors in fibromyalgia, SIBO and fibromyalgia, CFS may be autoimmune disease) These conditions have however have long been overlooked, misunderstood and more importantly dismissed by the medical profession and the public alike.

This dismissal is what has been the most damaging in my opinion. If the illness is not taken seriously then little research will take place. Without this research, medical knowledge and understanding will not advance and any possibility of proper treatment will remain out of reach. Furthermore patients will continue to be misunderstood and belittled by medical staff and the general public.

Sadly the feeling among the general public is that these are not "proper" illnesses on the same level, say, as MS, lupus or arthritis. Yet in my experience serious cases can be just as debilitating and require just as much support. This support is not just physical and practical but emotional too. Not receiving this and instead getting disbelief and even condemnation from friends, family, doctors, co-workers, acquaintances and the media is isolating and soul destroying.

A certain amount of bias also exists among medical professionals. While some doctors are sympathetic towards their patients, others are still very dismissive. Others still believe that these conditions are primarily psychiatric in nature. In some countries such as the USA the DSM 5 reclassification also makes these conditions particularly vulnerable to being classified as having a somatic symptom disorder.
There is nothing wrong with having a mental illness. However having a physical illness misdiagnosed as a mental illness is very wrong as it means that most patients will not get the treatment they need. Worse, they may be forced into unnecessary and inappropriate treatment. Imagine an MS patient being sent for CBT to alleviate their symptoms. Sounds barbaric? Not so long ago MS was also considered a psychosomatic disorder because the symptoms varied so much from patient to patient and doctors did not have a clear cut way to diagnose the illness. We now look back on this in horror. I believe one day we will do the same for fibro, ME and CFS.

I will admit to a certain level of personal bias. When I first got sick my symptoms fit MS. However this was unsupported by any test. Instead of delving deeper, my doctors in their wisdom decided that I had some form of psychosomatic disorder. Some went further and decided I was malingering. I was harrassed. One doctor went so far as to say "Think what you are doing to your family". I was sent to psychiatrists who found nothing wrong. This was ignored.
Eventually I was diagnosed with lupus (SLE). By then it was a little late. Permanent damage had already been done, not to mention 4 terrible years during which I began to believe I was an evil person for being ill! It took many years for me to shake the shame and guilt I felt. The psychological damage this caused cannot be emphasised enough.

I don't blame my doctors for not diagnosing lupus immediately. I was far from a textbook case. I do blame my doctors for reverting to a psychosomatic/malingering diagnosis when they couldn't find out what was wrong. It turns out that lupus is one of the most misdiagnosed disorders, known as "the great imposter" and many patients are told their symptoms are psychological.

This attitude of the medical profession must change. There is no shame in saying "I don't know". Medical research has only gone so far and doctors can only work with what they have. If something is unexplained it may simply be that medical research has not yet advanced enough to explain it. I strongly believe that this is the case with fibromyalgia, ME and CFS. More recent research tends to support this.

I can but hope that this research will continue to be well funded and shed light on what is really going on. Only then will patients receive the treatment they need and the stigma surrounding these illnesses finally disappear completely.


  1. Agree entirely, we are made to feel like time wasters or we are given a label of depression, yes we get depressed but its because we cannot function normally, we have these odd symptoms that gps dont know what to call so we get labelled. Even family dont fully understand as its not always visible. I put off going to the gp because it gets me nowhere and is a waste of my energy, i have no faith that anyone will help, I dont mind them saying "I dont know" They dont have all the answers but I really would appreciate a good bedside manner , some kind words would go a long long way.

  2. There's someone with fibromyalgia on the pain management course I'm doing at the moment, she's working harder than anyone to try and get fit and desperate for a cure. It shouldn't matter whether diseases/disabilities are physical or mental, but the truth is it does, there's still far too much discrimination for physical disability, but the situation for disabilities classified as mental is far far worse.

    1. There is no shame in having a mental illness and I hope no one thinks that is what I am saying.
      The point though is that it is futile and wrong to try to treat a physical illness as a mental illness. In my personal experience it may even cause harm.

    2. Also, so often doctors say ME, fibromyalgia etc. are psychological while making it clear that they think people are malingering or attention-seeking. This can only contribute to stigma again people whose illness is mental, when doctors put that kind of equation in people's minds.

  3. The problem is not that they don't know.

    What medically educated mind could fail to understand the implications of unrestrained viruses?

    Here is the REAL problem.

    They do know, and are doing this anyway.

    1. you are spot on eric
      it has taken a long while for me to defy my wife and doctor and go of a lot of there mind bending drugs
      for instance 120 mg of lovan a day

  4. This is from the WHO Twitter feed from this morning:

    "Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11"

  5. Just recently started looking into copper dismetabolism/copper toxicity and undermethylation as a possible cause.
    Discovered this possibility when looking at a website on nutritional management called
    I've been down so many pathways to try to improve already...what's one more?

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