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Hurts to be M.E



M.E, it's all about being tired all the time?  Burned out?  Chronically fatigued?  No.

My experience, especially during my 20s while I first battled severe M.E, was characterised by pain.  In fact as my mother's cancers progressed I was able to tell her when she needed to go and get more pain relief.  I had so much experience, I knew things were amiss even before she did.

"Many severely ill ME/CFS patients are hovering at the border of unbearable suffering. We are constantly plagued by intense symptoms, we endure high-impact every-minute physical suffering 24 hours a day, year after year. I see it as a prison sentence with torture."

~ Anne Örtegren, from her heartbreaking "Farewell" message.

For me, the pain of M.E and the fatigue became one and the same, in some awful kind of synaesthesia.  I perceived both as a constant white noise, a background soundtrack to my entire adult life, sometimes mercifully distant, others times a deafening, agonising, roar.

To me, M.E was like being pinned to the rocks beneath a waterfall and being endlessly pummelled by water.  The exhaustion of M.E is commonly described as a crushing, disabling, punishing, torment.

During my 5 decades I have experienced extreme pain. My shoulder joint occasionally attempts to push itself apart.  I have had concentrated boiling acid in my eyes and I have stuck my hand into a lawn mower.

The pain of M.E is real.  What I mean by this is that the pain associated with M.E is so aversive, so life-consuming and so quality-of-life consuming that its presence is, in of itself, damage.  The pain of M.E is reason enough for any medical practitioner to take urgent action.  There is a debate as to whether the pain of M.E represents physical damage, damage to signalling pathways, or is of psychological origin.  This debate is necessary and good, however, in *all* cases, the pain of M.E represents damage.

Where we, correctly, grant parity to mental and physical illness we must also grant parity and reality to mental and physical symptoms.  Whether the pain of M.E is experienced as a crushing fatigue, or a burning, twisting, contorting tension, the pain of M.E is as real as the hand in front of my face.  It leaves a scar.  And for some, like Anne Örtegren, it seemed utterly without end.  Remember; this is Chronic Fatigue Syndrome: you have to have symptoms for months before you are assigned the diagnosis.  The illness is so serious because of the length of time that it stays with you.

I think doctors forget this fact.  M.E could be as trivial as the hiccups, but when you have the hiccups every hour of the day for 35 years, it's a problem.  And, to be crystal clear to avoid all doubt: M.E isn't the hiccups.  M.E is a boa constrictor, squeezing the very life out of you.


When I was sent back to severe M.E, it was an unwelcome return to extreme pain.  The human body and mind naturally shed their worst experiences and, yeah, over the decades I had forgotten exactly how unbelievably awful severe M.E can be.  I remember struggling up and thinking:

"Yeah. This is intolerable."

And what I mean by this is that I would not ever expect and require myself to continue to exist under such circumstances.  It is unliveable pain and physicians would be well advised to check in on their severe M.E patients once in a while.  It is educational for medical men and women to consider just how many experiences, how many meals, how many relationships and how many simple joys they have experienced while their most severe M.E patients have lain in isolation and in darkness.  It is of particular use to them to then go further and to consider their life free of the crushing fatigue and pain that others have experienced 24 hours a day for decades.

I understand exactly why Anne Örtegren chose not to go on and I don't want to in any way undermine her decision, however I am aware that I have linked to her Farewell message and that other M.E patients may be scared by it or may even be facing the same choices and I so I want to add one thing:

For me, the extreme pain subsided, I am forever grateful to my former self for sticking it, and I am deeply aware that I am extremely lucky that my symptoms, though very harsh on times, turned out to be bearable.  I don't want M.E patients to end themselves and I have an article lined up to write about just this subject.  I didn't come through the agony of M.E symptoms, medical treatment and M.E activism without there being some dangerously low moments.

I know some people have gone, and I understand why, but I wish I could have told them: Just wait a little longer.  There are people out there who know exactly what you are going through and who are working night and day to try to come to your aid.  And there are people out there right now who will listen to and process and be changed by your experience.  You matter.  You are not forgotten. 

Keep going, if you possibly can.

We might hope that the pain of M.E would give us some clue as to its origin.  But, like everything else with M.E the problem is distributed.  That's one reason why I think the Institute of Medicine (now the National Academy of Medicine) attempted to rename the condition SEID, (Systemic Exertion Intolerance Disease).  A daily life with M.E is like spreading too little butter over too much bread, the holes, the thin patches, they don't always appear to be in one particular, physical, location.  Instead one's weaknesses are exaggerated, inflammation is triggered and healthy, necessary, behaviours are limited.

For now, it seems that M.E patients must endure the pain of M.E, without being able to glean any useful information from the message whatsoever.  What a cruel disease!  The only gift it gave to me was such a high a tolerance to pain that I didn't even bother to go to the Emergency Room when I first broke both my arms.  Instead I went out and shifted old oak writing desk given to my great-grandfather.

Any theory or treatment for M.E has to address both pain and malaise.  It must explain why the effects of M.E are so very distributed across all bodily systems.  And it must come quickly.  It must be safe and it must reach those who need it the most: the severely ill.

Best wishes to all of you.