Factors in Developing CFIDS/CFS/ME and Fibro (Part 1)

Plotting how to get through the slates to get into the water: and I did figure it out! 

Whether or not fibromyalgia can be brought about by head trauma is somewhat of a bone of contention, especially since one of the doctors who was on the committee that set up the criteria for fibro back in 1990 has since changed his mind about head trauma and fibro.  Unlike many of his colleagues, among them the very physicians who also served on that two-years-long committee of establishing fibromyalgia criteria, this doctor now claims that fibromyalgia is never caused by head trauma.  But it gets worse...
  
Incidentally, If you're interesting in what I mean by the criteria, and wonder who is that doctor  - well, he's an academic who sees almost no patients but sits in an ivory tower and makes proclamations. Worse, he practically decides, on his own, what research is going to be funded with the miniscule number of dollars allotted for fibro research.  You can read more on this here ("Fibro is no Accident"), here (Wolfe) and here (Fibro 101) as well as probably in another few posts if you put "head trauma" into the search engine on the right. Furthermore, I can tell you that physicians are, for the most part, afraid of this person because they know that going against this doctor can be dangerous, if not fatal, to their careers.  

An insider secret: the Vancouver concensus meeting in 1994 was far from a group of doctors reaching an agreement or consenus regarding the relationship between trauma and fibromyalgia.  Many bad feelings and rivalries came about as a result of that meeting.  I'd never seen anything like that and I, personally, consider that fibromyalgia research took a huge hit because of this physician who managed to alienate his colleagues and caused, again, in my own opinion, huge setbacks in the field of fibro.  Period.  I'm not alone in thinking this.

But be that as it may, I'm actually going to write about something different.  I just wanted to set the stage, so to speak, about the role of head trauma - and a bit more, of course. You know how I am by now! (I can see you nodding your heads!)

My doctors have always wondered what role head injury has played in my developing fibro and have also wondered if I was genetically predisposed towards fibro.  I've had at the very least 7-9 serious head injuries. Therefore, wondering if head trauma is a significant factor in all of this mess is not a far-fetched question. Here are just a few examples:

• I fell off the monkey bars at age 4 onto a cement playground hitting the top of my head first. (Ouch!)
• In 6th grade, the girls were playing some sort of kickball game against the boys. Being very athletic, I was the girls' choice for scoring a lot.  When it was my turn to kick that ball I wanted to do it right and kicked that sucker as hard as I could, missing the ball.  Unfortunately, my leg just kept going and I flipped over 360 degrees and landed on the cement playground and, you guessed it, the top of my head.  
• My brother once took a long branch and stuck it into the spokes of my front tire as I was riding my bike.  The bike and I flipped, with me, yet again, landing on the top of my head.
• When I was 12 years old, I decided to dive off a fishing pier. I wanted to show off my newly-learned shallow dive and in order for my friends to see it, I didn't go far down the pier, but stayed rather close to the front by the shore.  Fishermen at the end of the pier made wild gestures and tried to yell things out to me, which I couldn't hear, trying to get me to move. I thought they meant that it would be safer to be closer to the shore.  Well, I dove alright: right into less than 6 inches of water. My head was embedded in the sand, my behind jetted up toward the sky.  My friends all came running to get me out of the water.  Since this was a bay and not a beach, there were no life-guards.  As young as we were, none of us suspected that I should have been only minimally moved because of possible neck injury.  I was unconscious for a bit but no one thought to call anyone because I came to - after all, none of us had ever heard of concussions.  I ended up with one chipped tooth and a very sore neck.  I was extremely lucky, to say the least.  (And of course we didn't tell any of our parents! We didn't want to endanger further trips out to the bay.  We had priorities!)

Are you seeing a pattern here?  And these are just four incidents!  And may I say, is there any doubt as to why I always have on a nice pair of undies?  With me, you never know who will end up seeing them!

Though we (my doctors and I) had established how and why I had CFIDS/CFS/ME and thought we understood how I got the fibro part - as a result of the CFS - we always had to throw into the mix the question, what part did brain injury play in the whole picture, and was there, in fact, a genetic component at work as well?

Ahhh... but this will have to be continued tomorrow since it's become a rather long narrative.  Fear not: we have some fun things coming up.  Clues and teasers: a long-lost relative in the former Soviet Union and CFS/fibro - so I hope you don't forget to join me tomorrow!

In the meanwhile, I hope everyone is doing their very best, only better!  Ciao and paka! 

To be continued...

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Crying from my sickbed about another senseless CFIDS death....

Today I'm mourning the death of yet another victim of this monstrous and all too often fatal "syndrome" which too many doctors, health professionals and even friends and family are simply ignoring and/or, perhaps worse, refusing to believe in.  I did not intend to make this blog a place for downright preaching, perhaps because it turns so many people off of a topic that is often way too hard to stomach, and most definitely hard to understand and believe.  Today I'm crying because I've just learned about the death of a young woman whom I never knew, never even knew she existed, but have since learned how much she was able to accomplish in her short and tortured life: and make no mistake, she, as well as well as thousands, some suspect millions, are living a life of torture, for that IS what CFIDS/CFS/ME/Fibro is, "TORTURE." And yet she managed to somehow accomplish so very much in her short life, volunteering from her sickbed for the youth who have this illness as well as writing a guide to this illness for sufferers, a book which was well-received.  

After crying earlier in the day, I got angry.  I'm angry that this illness is still marginalized and I'm angry that funding is barely available for research and that the allocated funds in the past have also been "misdirected" to other places and mired in scandal.  It is disgusting.  Period.  Criminal.  Period.  Immoral.  Period.  Tragic.

Emily's family asked that the last letter she typed into her smartphone over a period of weeks when she still had strength be posted by anyone who cares about this illness.  Her words are so eloquent that I am proud to be able to place them here on my blog.  I am sorry for those of you who are uncomfortable with the "dirty" part of this illness, but this is one day that simply cannot be left to laughter.  

For those who would like to learn more about this brilliant young woman, the link I have here should give you more information:  
http://www.meassociation.org.uk/?p=10880

And now for Emily's so eloquent appeal:

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. 

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. 

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly. 

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison. 

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate. 

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. 

Many days I feel utter despair. 

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. 

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. 

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others: 

Please put an end to the abandonment of people with severe ME and give us all real reason to hope." 

How many more deaths will it take before something is done about this "syndrome?" Too many have already died and yet it continues... Царство тебе небесное...may you rest in peace, Emily.  (1981-2012)