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.

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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!