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Saturday, 28 October 2017

Diagnostic Criteria


I'm in Cuba! It's all exciting stuff and I can't wait for Sally to show you the photos of my adventure! I have quite a lot of new followers, many of whom are learning about M.E through ME Foggy Dog. So, today I have asked Sally to go back to basics in terms of how we get diagnosed with M.E/CFS. Here goes.

Foggy snogs xxx


Anybody remember Systemic Exertion Intolerance Disease (SEID)? I haven't heard it mentioned since 2015 when I gave my first awareness talk. However, the diagnostic criteria still seem the best way forward to me, in terms of what to look for when looking for a diagnosis.

I've copied this bit from the linked article below:
The new criteria is based on 4 of 5 core symptoms, requiring:
    • A substantial reduction in activity
      • More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
    • Post exertional malaise
    • Unrefreshing sleep
    • Either cognitive impairment or orthostatic intolerance
Diagnostic criteria of SEID

As I said back in 2015, I have ALL of the above. If I ever doubt my diagnosis all I have to do is refer back to the criteria to be reassured that, yes, I do indeed have the dreadful illness that is currently known as ME/CFS/SEID...and a few other abbreviations! I have lost count of the number of times I have spoken to other sufferers who, on good days, wonder if we have been misdiagnosed or are living in a dream world (why else won't people accept us as ill?).

Recently, I have met a wide range of people who could benefit from looking at the above criteria. A few of the people I met are newly diagnosed and haven't had the illness fully explained to them by
their healthcare professionals (SURPRISE!) and only know of the symptoms that they have themselves. They don't have a clue that there are 17 million (very, very...very low estimate!) other people around the globe with the same illness, though perhaps at a different level of severity. They don't know that there is a fight going on. They simply accept the diagnosis and blindly struggle through every day, accepting bits of therapy that are thrown in their direction occasionally. How do I know that? Because I was one of those people. I only realised there was a fight and a desperate need for research when I started Foggy. If I hadn't started Foggy, I would still be clueless in terms of the wide range of symptoms, many of which I don't personally suffer from. Who knew M.E patients are in pain? I didn't. Because I am lucky to not have that symptom. I have also met someone who is in the process of being diagnosed. She is scared to receive the diagnosis as she acknowledges that it would be a life-changer. I have encouraged her to read my blogs to get a general idea of M.E, from a human perspective, that is free from medical jargon. I hope that she reads them (hello if you are reading this!). I think it is better to be armed with info than fearing the unknown.  I've also pointed her in the direction of the ME Association for support and medical info. Fingers crossed, she will have been worrying for nothing and won't get a ME/CFS diagnosis.

On telly yesterday, Dr. Charles Shepherd (ME Association) and Jen Brea were promoting Unrest and raising awareness of ME/CFS. Dr. Shepherd said that it is relatively easy to diagnose ME/CFS. It may well be but it needs to be clear that many of us go through years of tests, unsatisfactory visits to the doctor's office and stress before we receive that diagnosis. I had ME/CFS symptoms 3 years before I received the golden ticket AKA a diagnosis. My story is a common one. 

Here is a link to ME Association - What is M.E?   http://www.meassociation.org.uk/about/. Check it out for more info.


and Foggy (OBVIOUSLY) xxxxxxxxx

1 comment:

  1. Thank you for this list Sally. After almost 7 years there are still times I wonder if this is in fact what I have given how I'm treated (or lack thereof) by the medical community. It is rather surreal to think that just a few months ago I packed and unpacked all my own boxes when I moved. Now I'm mostly housebound, once again feeling utterly exhausted after having a shower or moving my garbage can to the end of my very short driveway. As for what to call it? I won't use the SEID acronym: a) because I can never remember what it is supposed to stand for; and be) it still leaves out a host of symptoms. I will only resort to CFS/Chronic Fatigue Syndrome when my brain and mouth won't work, or when just trying to make a quick point and wanting to avoid a long drawn out explanation of why ME and chronic fatigue are not the same thing.

    Thank you for your determined desire to help both the newly diagnosed and those of us who've been at this for a while. Going back to basics is a very good thing and something I could probably benefit from every 6 months or so. That of course will need to be put in my calendar because I'll never remember! LOL
    Bless you sweetie ❤️