It’s not fatigue!

I know I said my next blog post would be on food, but after reading some research published today on Chronic Fatigue Syndrome the food post will have to wait.

I saw an exciting headline which said “ME is real.  Scientists have discovered specific blood chemicals in CFS patients which are similar to those seen in hibernating animals.”  Big sigh.  In fact, huge sigh.  Since when did hibernating animals feel ill?  Maybe this is just the Daily Mail’s take on the research, but if so it’s replicated by the broadsheets, eg The Telegraph.

The cardinal feature of M.E. is post exertional malaise (PEM), ie feeling ill and fluey after exertion, either mental or physical – very trivial exertion like cleaning your teeth.  When did this number no.1 diagnostic criteria disappear?  When did the no.1 diagnostic criteria become chronic fatigue, which btw is a symptom not a disease and common to many illnesses, eg. depression, cancers, hormone disorders, heart disease, Ehlers-Danlos Syndrome to name but a few.

When did symptoms of immune activation, like sore throats and tender lymph glands, disappear from the diagnostic criteria?  When did central nervous system symptoms like dysautonomia disappear from the diagnostic criteria?  Why does no-one ever talk about paralysis, or a-typical seizures or new onset dyslexia?  Or horrendous muscle twitching, peripheral neuropathy, speech problems, light, sound and touch sensitivity?  Or drug intolerance (or in my case complete allergy) and alcohol intolerance?  When did the number one symptom for ME become persistent fatigue and nothing else?

What happened to starting ME with a virus or vaccination (ie an immune event) which you simply never get over?  What happened to having to rule out primary mental health issues like depression and anxiety before a diagnosis of ME can be made?

This is what happens when you call Myalgic Encephalomyelitis Chronic Fatigue Syndrome.  This is what happens when you water down the diagnostic criteria and include just about anyone with chronic fatigue as a symptom.  You end up with the focus on fatigue and nothing else.

I was told by doctors that I was so ill I might not make it through the night.  Twice.  You don’t die from “fatigue”.  You are not bedridden, have seizures or become paralysed by “fatigue”.  You do not lose your speech or your mental faculties because you are persistently tired.  I was not in “hibernation” for 10 years.  I was near death for 10 years, every second of every minute of every day.  And FWIW I couldn’t sleep a bloody wink.

I haven’t read the actual research paper as I don’t have the brain power.  I read on the ME Association’s Facebook page, however, that it’s very exciting research and could be potentially important.  But the newspapers still focus on the F word and, let’s face it, the public are going to read the newspaper reports not the actual research.  And they’re going to take away from it that we are all cute little hedgehogs, sleeping our days away!  I wish.

When am I going to read a newspaper report that tells ME like it really is?  That doesn’t even mention depression.  That doesn’t drag up the ‘Yuppie Flu’ reference?  That doesn’t tell me changing my diet, joining a gym or taking an expensive supplement will cure me?  Because when that day comes I’ll celebrate and not until.

 

 

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4 thoughts on “It’s not fatigue!

  1. Livvy Sheep

    I love what you have written, do you think one of problem stems from the language we use to describe our symptoms and then how doctors interpret that? I feel like lots of neurological symptoms are not discussed in enough detail or our difficulties many not be immediately apparent as neurological dysfunction and the all encompassing fatigue label comes out to play meaning so many things in so many ways. I have personally just had a new label of ‘functional neurological disorder’ but you could present with these symptoms to another doctor and be labelled ‘ME’ or part of ‘EDS/PoTs’ there seems to be a lack of clarity in distinguishing these conditions but i definitely know that non epileptic seizures and central nervous system dysfunction of processing and motor control to name just a few are DEFINATELY NOT FATIGUE!!

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    1. Jak Post author

      Hi Livvy

      ME is *easy* to diagnose. It’s the only disease with post-exertional malaise as the cardinal symptom, then immune activation (eg sore throat), POTS etc. as secondary symptoms which support the diagnosis. Simple as that. I really don’t know why doctors find it difficult. As far as I know it’s the only disease with the hallmark PEM as the cardinal feature. EDS causes me serious fatigue and pain but doesn’t give me a sore throat simply because I’ve spent too long reading a book!

      It’s not really that difficult to separate the illnesses – IMHO it only becomes so when doctors are uninformed and think that chronic fatigue is ME when it absolutely isn’t.

      Jak x

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  2. Lisa

    This is very intresting. Thanks for sharing. Brings up another question, I was dx with Fibro and CFS, 25 years ago. I would like to know, How many with CFS, also has multple chemical sensitivity, and Electomagnetic sensitivity. I have both and 3 autoummne diseases, connective tissue disease, and mcas. And numerous type Iv skin allergies to chemicals and metals.
    Thanks

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    1. Jak Post author

      Interesting question Lisa to which no-one has the answer sadly as no statistics are available. As you may know, I think ME is a type of mast cell disease (see my Canary article https://mastcellblog.wordpress.com/2013/11/12/canary/ ). Lots of people with both EDS and MCAD also have ME. The reason being, EDS (and other connective tissue diseases) causes mast cell disease in some people, and if ME also involves mast cells it stands to reason these people will also be susceptible to ME. There is a defininte link between these 3 diseases.

      To me, it’s the mast cells causing the chemical and drug sensitivities, so if ME is a type of mast cell disease people with ME will be chemically intolerant – and most people with ME are to some degree. In fact, if someone *isn’t* either food, alcohol, drug or chemically sensitive/intolerant I would go so far as to question whether their diagnosis of ME is correct.

      Jak x

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