Any intelligent fool can make things bigger and more complex… It takes a touch of genius – and a lot of courage to move in the opposite direction.
~ Albert Einstein
I speak to a lot of doctors. It is common to hear that they do a bunch of elaborate tests that let them “individualize” treatment. They feel they have identified The Defect, and can address it, in this way or that. There will be an overly intellectualized theory, but mostly, the strategy involves replacing a substrate, using a little known intermediary, or overwhelming a block in a metabolic pathway. That strategy can make the difference, though it often doesn’t, because no matter how far you take it, you don’t know enough. I know a woman who was housebound for a decade who was able to return to work after she started B12 shots. But for every one of her, there are an awful lot of people for whom B12 made no noticeable difference at all. To make matters worse, an intervention might not work, but “work” at another time for a given patient. For every case of something definite that brought about a remission, I hear about a few spontaneous ones, even after many years, where there was nothing that could be identified as making the difference. One of the most tantalizing things, and you hear it regularly, is that something worked for a few days, and there was a taste of almost normal. That implies reversibility.
The blog has a tracker that shows the most recent readers on a map of the world. There is often someone tuning in from Tromsø Norway, at the top of the world. It is interesting to note that MS is more prevalent in northerm latitudes. The very extreme form of ME, which seems to be more common in Norway in particular, reminds me of an adult form of autism in a sicker body, with PEM and pain thrown in. ASD looks different because it occurs in the developing brain, but the obvious commonality of symptoms is there. Extreme sensory overstimulation. Can’t stand light and sound. Problems with touch. Problems communicating. Concurrent GI dysfunction.
We haven’t heard from the Gulf War Illness community here yet, but it seems to me, it is the same illness. I had more of a GWI, than typical CFS, presentation. If it’d been a couple of years earlier and I’d been a soldier returning from war, instead of a post-partum ER doctor, GWI would have been my diagnosis. I had olfactory hallucinations, or flashbacks, of the worst burn case of my career. I now think of them as 1rst cranial nerve discharges, rare and without emotional content at this late date, but it seemed pretty classic PTSD at the time. My psychiatrist called it “vicarious PTSD” from the ER. Do you believe it? He didn’t even let me own my own trauma. I said it felt like the flu. I used the word malaise. Psychiatrists have done me a lot of harm. But I shouldn’t single them out; it’s just somehow more personal. But the rest of my doctors and dentists, in hindsight, mostly chose the stupidest thing too, because of profound misunderstanding of the illness and disbelief. And speaking their language didn’t help at all.
Being unable to depend upon the stability of the ground beneath me has been a tough, but effective, teacher. I don’t sweat the small stuff anymore. Acceptance is my mantra. My uninsulated wiring and limited physical ability require a simplification of thought and action that in the end boils down to common sense, something I didn’t always have. I have learned to ride over the bad moments and find great joy in the good ones. It is all very close to the surface. I spoke to a woman last week who referred to herself as “an idiot savant”. That struck a chord in me. We have all had to learn to live with diminished capacity. For me, functioning requires first surrendering to the illness. If there is a silver lining, it’s easy access to my own truth. I don’t over-think things or worry much any more. It already happened. It’s become about what I can do, instead of what I can’t.
P.S. My email has gotten away from me, as it is very heavy. The survey has taken a lot of attention. If you emailed me about something important to you and I missed it, please resend. Once in a while, if I think about a question too much, it doesn’t get answered. Sometimes I have nothing to say and don’t answer because I think it might come to me. I read every word and am sustained by hearing that it is helping in some way. Your emails make me think and care. I try to cover recurring themes here.
>Hi Jamie.
I guess I am the one tuning in from the top of the world in Norway.
I am not one of those that are most ill in Norway. When you see how they live in dark soundproof rooms for years and years you really really hope research will move fast forward so they can get some help.
This weekend its been 10 years since my flu and the sudden onset. 10 years since I worked. My sister told me she missed the old me, I too miss the old me. So taking stock after 10 years with ME on the top of Norway:)
hatshepsut
>Hi,
What is the recommended dose of B-12 by injection weekly?
Thanks :-)
>the paragraph before the P.S. says it all. It is the only way to have a life. Very difficult to get to that conclusion but so necessary.
>This blog is a conduit to a kind of care and common sense I can't get anywhere else. I know you do not practice medicine on the blog. I know you are not giving medical advice. You do care, however, and, despite the fact I have never emailed you nor do I think I ever will, the fact that you care and that you keep writing your truthful experience as a human being who happens to be a doctor, and a smart woman, brings me real comfort. Thank you.
>I am in the UK with moderate to severe ME, slow onset for 20+ years, but precipitated worse 11 years ago. I am also struck by the similarities of ME, autism, GWS, and MS etc. I really believe we are seeing the generational accumulation of vaccination damage. Doesn't mean their aren't pathogens involved, like Lyme, EBV, XMRV etc. But these can be as much oportunists as harmers. It also doesn't preclude additional harmers, like pesticides. Just my opinion, though.
>Einstein's genius was in looking at all the available information in a new way, and then developing a revolutionary theory that fit all those facts parsimoniously.
That's a lot different than cutting all the complexity out of a situation for the sake of expedience, sticking with the same old way of looking at things, and studiously ignoring the problem that the theory does not fit the facts.
>From my almost-four year old GRANDdaughter: "You get what you get and don't be upset." Here I am with a diagnosis I'd really prefer not to have, but here I am. Getting upset only creates stress which is certainly not going to help me get/be well. Being well is my heartfelt intention — for me and for anyone else who reads these words.
>Regarding the overlap of ME/CFS with other diseases such as autism, the CDC scandal involving its treatment of autism is finally coming to light! So the vaccines are a problem…Let us all take a lesson:http://www.prnewswire.com/news-releases/autism-and-vaccines-researcher-for-cdc-indicted-for-fraud-and-money-laundering-119853574.html
>This post literally brought tears to my eyes, it hit so close to home.
Thank you for articulating this so clearly; especially this:
"The very extreme form of ME, which seems to be more common in Norway in particular, reminds me of an adult form of autism in a sicker body, with PEM and pain thrown in. ASD looks different because it occurs in the developing brain, but the obvious commonality of symptoms is there. Extreme sensory overstimulation. Can't stand light and sound. Problems with touch. Problems communicating. Concurrent GI dysfunction."
I am 48, have CFS (the extreme brain fog-gut is a mess-kind) and I also have a 51-year-old autistic brother…coincidence? Absolutely not. No way.
>To hatshepsut: When I read your comment, I wanted to respond. One of the hardest things for me to cope with this illness is missing the old me too. With all the physical distance between our countries, we are experiencing the same thing. I'm sure there are many more like us. You're not alone!
>To Ellely and Hatshepsut;
And I cannot allow myself to think about who my children and I would have grown to be. Too tragic!
>The one thing that has given me hope in my 15 years of illness – the days or hours when my symptoms completely go away. And, yes, for me this does happen from time to time.
Paula Carnes
>Twenty five years ago, I told Dr Cheney and Dr Peterson that until they discover the cause of the mystery-malady, I will pursue the exploration and utilization of that "Good Day / Bad Day" effect to the maximum extent possible.
And that is precisely what I did.
>I believe that the reversibility of M.E. ill-health is definitely possible.
Four or five times a year, spontaneously, without provocation, I feel a welling-up of energy. The whole episode, from beginning to end, lasts for about 10 minutes then I'm back to ab-normal. For those unpredictable few minutes I feel like I'm becoming me again.
Three years ago, for no obvious reason, I woke up well. That lasted, at 95% normal functioning, for about a week, then, gradually over about four months, I returned to M.E. yuckville-ness. The thing is, with that well-episode, I actually felt better than I'd felt since my late 20s when I'd succumbed to a particularly bad case of Toxoplasmosis.
I always have hope, but the frustration has been ramped up too – the solution feels simple, but hidden.
And, after 12 years of M.E., I'm getting old – will I get significantly better before I'm too old to do much?
I guess a lot of us feel similarly?
>Is it Norway only, or Scandinavia, in which case I'd wonder if the extreme lack of sun contributes (even as fair-skinned as they are, many don't get adequate sunlight/Vitamin D).
A study I just saw finds risk of multiple sclerosis higher in those who had a bout of mononucleosis *and* live in low sunlight areas.
>Hi jamie,
I love reading all your blogs, always look forward to them.
love crafter Kate xoxoxox
>"Yuckvilleness", I love it.
"Everyone a-BOARD!
Last train to Yuckville"
>'If there is a silver lining, it's easy access to my own truth.'
I completely agree. For years I railed against what had happened to my life as a result of M.E.
Then I had a conversation with an elderly family friend, who changed how I saw it. She said 'Alongside the havoc it's wrought, what else has being so ill done? What do you know about yourself, about what's important to you, about what you need, that you didn't know before you got ill?'
She was so right. In the desperation and real shock associated with getting so ill, I didn't notice what else came with it, and Jamie has summarised it briliantly – access to my own truth. Emotional information I don't believe I would have got otherwise.
Since then, I rarely look back to who/how I was then, nor do I torture myself with imaginings of how me and my life might have been without this illness. Accepting it has made genuine room for a different kind of happiness for me, based on knowing myself and listening to myself more clearly than I've ever done before, and understanding the experiences of others with such life-changing experiences.
Billie