Wednesday, 11 February 2015

What's SEID Matters!

So when I first saw the name "Systemic Exertion Intolerance Disease" I was relieved: At least the word "fatigue" was gone!  No more "Chronic Fatigue Syndrome" slurs for us, I thought.

Acknowledgement at last?
The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. 
The word "disease" in there pleased me in those first moments too, and the fact that the disease is recognised as "systemic" - that's got to be good too? Right?  Finally add in the fact that the name describes patients' intolerance of exertion, and you'd think I'd be totally won over by the name....

But I'm not!

SEID - Systemic Exertion Intolerance Disease - still sounds a clumsy, descriptive and not a really serious name.  It doesn't portray any of the seriousness of the very severe end of the spectrum, and implies that if we just avoid exertion then we will all be fine and dandy.

Would folk with Diabetes be delighted with "Systemic Sugar Intolerance Disease"?
I doubt it.

Nice name or not, the IOM report on redefining ME/CFS was released yesterday 10th February 2015.  This 304 page report could have far reaching implications for ME patients world wide.  A Key Facts document and a Power Point presentation summarise the main findings of the committee.

The first thing I wanted to see was how the IOM proposed to diagnose the disease.  And again, at first glance this makes a lot of sense.
Click on any image to make larger

Yet, for me, I was a little uncertain about the "unrefreshing sleep" compulsory criterion.  At the time I was diagnosed my sleep was okay.  It is less good now, because I tend to wake much earlier than I want.  So am I refreshed?  Well I'm better than if I'd stayed up all night, but I'm still "ill".... does that count as "unrefreshing sleep"?

Then the question of what is meant by "Post Exertional Malaise".  If I exert myself I my body has two responses: one at the time, when my heart races, and I quickly run out of steam; and the other two days later when I feel like I am drunk, have flu and a migraine all at once!

This descriptor doesn't seem to insist that the patient has a delayed response, similar to the type revealed by the 2 day CPET test.  So could a patient, with symptom exacerbation just at the time of exertion or in the few hours directly after exertion, qualify as having PEM for the purposes of this diagnosis?

And if so, is that description true to what many experts feel is the central issue of Myalgic Encephalomyelitis?

And why again was the perfectly adequate name of Myalgic Encephalomyelitis, recognised by WHO since 1969, dropped?

Much debate has been stirred up within the ME community, and already Dr Enlander has spoken up to state his concerns:

And the media? Well they just think, new name for old condition.... so they look up all the old CFS material and tell the populance that Cognitive Behaviour and Graded Exercise Therapies are known to help.  I sure hope that some-one in authority will consider putting the press right on that issue fairly quickly.

Sadly, when a question about GET was asked at the presentation of this report, the committee evaded answering and said that treatment recommendations were outside of their remit.  Ho hum!  

So, looking on the bright side, what might be good about this report?

Well one good thing I can see, is if this report brings in its wake a huge dose of funding for real biomedical research!

As for the new name?  Well, now that I've thought about it overnight, I realise that it is not a name I will ever voluntarily use to describe the disease that afflicts me.

I have Myalgic Encephalomyelitis!


  1. This is at least the third time the US has formally rejected M.E., without any effort to explain it. It is American tunnel vision.

    FWIW, the full report discusses 2-day CPET testing favorably.

  2. Exactly! More gibberish & gobbledegook from the U.S. Importantly though is that this illness is M.E. It is not CFS or any other name. They had changed the name to CFS, focusing on one symptom. Now they've changed it from that to SEID, again focusing on one symptom, albeit an important one this time. Still nonsense!

    M.E. is a recognised illness. Since 1969 it has been included in the WHO classifications of illnesses, G93.3, neurological.
    Does the IOM intend to "persuade" the WHO to include this nonsense name, SEID, in their classifications and, if so, under which classification? Also, what does the WHO do with M.E.? Just remove it??

    It is all nonsense, a waste of time, energy and definitely a waste of money!! Money that could have been spent on research that could have helped treat people with M.E.
    50 M.E. experts had contacted the IOM stating that this was all unnecessary. They are experts, they know about M.E. There were criteria published already, we didn't need another one.

    How about we change the names of most other illnesses, e.g.:
    Emphysema - Chronic Coughing Syndrome
    Parkinson's - Systemic Shaking Disease
    Huntington's - Systemic Movement Intolerance Disease

    It's absolute nonsense! It's also disgraceful and hurting extremely ill patients.
    Thanks for your blog :)

  3. Well said all round.
    Absolutely re the PEM! 1 1/2 days after for me!

    I would like reference to some immune dysfunction and pain which are both huge for me. I would also like no pre existing fatigue causing condition.
    Sleep disturbance i do believe should be in though, that and pain my first symptoms 7 yrs ago!

  4. Most reports are echoing the IOM in stating that Myalgic Encephalomyelitis was an inappropriate name because muscle pain (myalgia) was not a consistent symptom (!) and there was no solid evidence of "-itis". But in the San Francisco Chronicle this morning, the story (which ran on page one) contained the following:

    "Even the name was problematic because it oversimplified and downplayed the damage caused by the illness, patients say. In recent years patients have tried, with little success, to push away from "chronic fatigue syndrome" toward "myalgic encephalomyelitis," a term some said more accurately described the brain inflammation found in many cases."

  5. CFS is not a name I'd ever use. It says nothing about any of the other and more horrendous symptoms patients suffer. Nothing about the PEM nor the Pain, Brain malfunctions and the myriad of other symptoms patients experience. SEID does cover the "whole body affected" of the illness and I was very pleased that it has been stated as being a DISEASE and not just "A Condition" which has caused me a great deal of grief. As Mary has said M.E does tend to describe the brain inflammation [with several recent studies showing that M.Es brains have inflammation in the same areas against controls which had none] I guess that M.E will continue to be used at least here in the UK- we have never liked CFS which is too "woolly" for us. SEID doesn't run off the tongue easily and when asked "What's wrong with you?" I guess the Brain Fog will kick in and well have more problems explaining just what it means. There's no easy answer for such a complex "disease" and if they do take it up most patients will continue to use M.E [our Doctors tend to use CFS these days but I have never used it and will continue not to use it. It took me decades to get a diagnosis and at 71 I will continue to say "I have M.E"