Monday, 14 July 2014

A Skeptic with M.E.



I am skeptical about pretty much everything there is to be skeptical about.  It is my instinct to want proof, plenty of evidence, scientific rigour and for a hypothesis to at least become a working theory.  The scientific definition of theory is not the same as the lay usage of the term and in science anything called a theory is accepted as true.  I invite you to consider the theory of gravity. I am not inclined to magical thinking, though I am not immune to it and from what I have read on the human brain, I would not be human if I were.  Magical thinking is a very human trait but the human brain has also evolved the ability to be skeptical, thankfully.  You'll notice I'm not thanking any gods for that.

Skepticism and magical thinking are both most likely to be applied in the realms of religion and medicine.  Religion is not much a part of my life but medicine is in the sense that I live with a chronic illness and have lived with it for most of my life.  Unfortunately it is an illness about which not much is known and this leaves it open to the many ideas of those who find alternative medicine appealing.  If I only had a dollar (that's the inflationary version of the old saying) for every time someone I've met is convinced that some juice, royal jelly, herb or vitamin will cure me.  In fact I'd need that dollar to be paid out because alternative medicine is expensive.  I could spend millions trying out all the possible cures, non of which have ever been found to permanently cure anyone of M.E. and many of which have not actually been scientifically proven to cure anyone of anything, other than some of the obvious things like if you have scurvy try taking some vitamin C.

Scurvy has been ruled out in my case, but a few years ago I had to break up with my massage therapist because she began selling some miracle purple juice concentrate.  She was convinced it had restored her to her natural level of energy and vibrancy and that it would do wonders for me too.  I am quite capable of saying no, but it can still get awkward.  The response of someone who truly believes in their medicinal magic cure is generally that if you are refusing to try it you clearly don't really want to get well.  I am a very patient person but this tries my patience.

After that month of horrible headaches I recently suffered, I saw my doctor who confirmed what I suspected, which was that my neck and shoulders were really tightly locked up.  I am quite prone to that and it had gotten so bad that it was causing pain all the way up through my head.  I went for therapeutic deep tissue massage, the kind that really hurts, and after a couple of rounds of that it released the tension and successfully brought me back to my normal level of headaches.  I will continue to go for maintenance massages to help, along with some gentle stretches and exercises for my neck and shoulders, but I once again have had to deal with a massage therapist who wants to suggest alternative therapies to me to treat my M.E.  Have I tried alkaline water, Traditional Chinese Medicine, or meditation?  No, no and yes.  I politely listened to the long list of treatments I might consider, the books I might want to read and the things I may wish to eat or drink in order to obtain my optimum level of health.  I am good at politely listening, smiling, saying 'oh well isn't that interesting', and then doing exactly as I please.  As a massage therapist he is excellent. I think that people who work in the field of helping and healing want to do everything they can to help so they make suggestions about things they think might work and they step a little beyond their realm of expertise.

But I have an excellent doctor whom I trust, who wants me to be well, does not benefit in any way from  my not being so, and who would not discourage me from anything where there is evidence it could improve my health.  He does not prescribe a long list of pharmaceuticals as there is little there which can help me either, other than a few things to address some symptoms, so it's not a matter of his being involved in a certain system and supporting Big Pharma.  In fact he is very reluctant to prescribe things so I feel quite certain that what I do take is well considered.  I have troubles with sleep but I am not prescribed any sleeping meds and I have pain but I keep the pain medication minimal too and stick to over the counter medications to moderate it.  Such decisions are personal decisions to be made between patient and doctor and may not be the same for every case of M.E.

I am not skeptical about there being ways in which I can adjust my life style, my self care, my diet or sleep habits.  In fact, what is known of M.E. is that the most effective way of living with it is lifestyle management.  That doesn't mean the same things that a person without M.E. might do will always work for me, and in fact most levels of exercise except for mild to moderate, are detrimental to someone with M.E. I'm sure you can imagine how I feel about the "helpful" advice I sometimes receive from well meaning people who suggest that I need to exercise more or that my problems stem from not being fit, as opposed to understanding that my not being fit is a result of the M.E.  

I don't wish to rant forever, but sometimes I write about M.E. because what I do wish to do is help people to understand what M.E. is and improve understanding of it so people with M.E. can achieve the same level of understanding from the general public as people living with MS.  I wish to offer my own experiences as support to people who may be suffering from M.E. themselves and who may read this.

Below is an excerpt from the website of The ME Association, which is UK based.  Source Here

Main Symptoms of CFS/M.E.

  • Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).
  • Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting).
  • Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.
  • Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptomatology.
  • Some people also develop emotional lability or mood swings and features of clinical depression as time goes on.
ME/CFS symptoms tend to fluctuate in severity throughout the course of a day and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). Relapses or exacerbation are often precipitated by infections, excessive physical or mental stress, general anesthetics and surgical operations, and extremes of temperature.

-End of excerpt


Final Note:

There is a saying that a little knowledge is a dangerous thing, and I find this to be the case with the so called health information that is disseminated through popular media, particularly in women's magazines.  I flipped through one such magazine at the doctor's office today and came across a blurb that informed readers that studies show slouching causes fatigue and depression so we should all be sure to improve our posture.  What a forehead slapping moment!  As someone who has suffered from both, I can assure anyone who cares to know, that fatigue and depression CAUSE slouching and there seems to be a serious case of confused cause and correlation involved here.  The moment someone advises me that the cure to all that ails me is to start walking around with books on my head to improve my posture, you can be sure I will have a blog post to write!

31 comments:

  1. As someone who has dealt with the chronic illnesses of two family members of which little is medically known, I understand your frustration. Outsiders can be sympathetic over the short term (Oh, hope you're all better after the strep throat/surgery/etc., etc.) but seem to have a very hard time coping with chronic illness. Just get a life and get over it, seems to be a common attitude. Not sure why that is. Our need as people to have everything neatly tied up and dealt with? That they themselves could be vulnerable? My compliments to you for dealing with it as patiently and tactfully as you do.

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  2. Hi Charlene! I am trying to get caught up in my blog reading and only just found your reply to me on Sally's blog a few minutes ago. I see you found me. Thank you for visiting and I'm sorry the post you had to stumble on was a heavy one. I don't do this often. Thanks for taking the time to leave me a considerate reply. Perhaps the heat is making me cranky, but I can assure you I am usually quite jolly! LOL
    xoxo

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  3. Shawna please don't apologise for explaining your illness! It's great to hear more about the details you deal with, and certainly doesn't make me want to walk away. I know about the well meaning advice, having received it from various sources during my life! Glad you received some relief for your headaches. I struggle to let someone touch me, so I have to be really desperate to go to a massage therapist. Sometimes it can make things worse, especially if they try and suggest other remedies! Then they get to deal with my overload meltdown...such fun! :-) XO JJ

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    1. I am not thrilled about strangers touching me and usually my first time with a new person I am very tense and hold my breathe. Then they typically 'diagnose' me with a breathing problem. LOL They can so easily forget that you are shut in a small room, naked and with a strange man touching you.
      xoxo

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  4. As a fellow skeptic, I also find myself thoroughly irritated by all the crap people write/talk about health issues, based on very little knowledge. Mental health, as well as physical. Thank goodness you have an excellent doctor, and enough good sense not to fall for all manner of alternative "cures". I was talking to my friend, whose father has various ongoing, investigated-yet-inexplicable symptoms, and she asked me if I had heard of a particular "treatment" which he had read about in the paper and was intending to try. After some discussion, it emerged that the article was in fact an advert, and of course the "treatment" came with a hefty price tag. No evidence, no information, pure scam - but he was going to try it and waste his money, out of pure desperation. Makes me sad, and mad.
    The frustrations and difficulties of living with ME must be huge, and you manage them with good humour and grace, Shawna, though I don't doubt there are many times when it doesn't feel that way to you. Now - sit up straight, and where are those books?! xxxx

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    1. Yes, it is that desperation these people often prey on. These treatments sometimes do help some people, though not always permanently and then of course there is that placebo effect to consider. There usually aren't scientific trials on the treaments, just people who swear it changed their lives and thus you should do it too!

      I am often complimented, if that is the right word, for being cheerful and not complaining and coping well, and perhaps that is true, but I am only being myself and don't know how to do it any other way so I don't feel it is any great virtue. If I do talk about it or draw attention to it I can feel a bit of guilt and think oh dear I am whinging and I must not. But as my mother pointed out, when I am too inclined to suffer in silence people don't understand it and sometimes I need them to.

      My books are everywhere, but none are on my head!
      xoxoxoxo

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  5. Ah yes, where to start with this one. Homeopathic "meds" are extremely popular here. Almost everybody are using them. The brain is such a weird machine, you just have to convince yourself that this herb will help and it DOES. But what about serious cases, where you take those stupid sugar pills and wait for something to magically happen... Not good. And the recent "vaccines cause autism" shit is brilliant as well...
    My mom is into the whole "magical healing" properties of different wells and holy water etc, so I'm not fully against that, because I see she truly believes it and it helps her to cope with a lot of things. But there has to be a balance, there has to be scientific treatments as well, not just sugar pills and nonsense.

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    1. Well said, Keit! There is sometimes a comfort value in the alternative treatments people seek and sometimes there may be a remedy that helps someone or eases a symptom but if these treatments really worked legitimate medicine would use them. I think people want to feel some sort of control and some sort of hope so they try anything and everything. It's okay if it's harmless and who am I to tell people how to spend their money, but it makes me angry when it causes harm. Don't get me started on that vaccine thing!!
      xoxo

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  6. I get it all the time - bizarre suggestions of how I can conquer arthritis and degenerative disc disease by drinking Aloe Vera or some other snake oil or by giving up cheese or going on some strange exclusion diet which would do nothing more than make me feel miserable. People do mean well but they really do drive you daft, don't they? xxx

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    1. They do drive me daft! Sometimes I am so daft-driven I have to rant in a blog! I'm sorry you suffer from arthritis and degenerative disc disease. Have you tried royal jelly? Just kidding! xoxoxo

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  7. i can understand that you be feed up with health tips!
    but i like to know what YOU WISH is the right reaction/answer when someone is confronted with your illness?
    your doc sounds good - not easy to find someone like this in this days where money dictates cure.
    myself made very good experiences with alternative medicine and yoga. ten years ago my spine in the breast area almost killed me with pain and getting stuck every other week. after radiologic the doc said that the vertebra started to grow together with bone material - irreversible. so i was on the way to develop a humpback (granny had one). then i met my yoga guru 7 years ago. she worked with me and after some months i could do a mild back bow the first time since years - and a ocean of tears run out of me...... since then the spine is flexible again and never got stuck again - no humpback for me. ok. i have to work every day on it......

    so i´m a big believer. but i know other people are different.
    xxxxx

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    1. What is the right thing for someone to say when confronted with my illness? Most people are not directly confronted with it, but "I'm sorry you suffer from that; it must be difficult." will do quite nicely. I did not go to the massage therapist for any sort of treatment for my illness I went for stiff muscles. I informed of my illness because I had to explain to him why I am not involved in an intense exercise programme and of the fact that I am in the process of recovery from being bedridden and it is a slow process.

      I don't consider yoga to be alternative medicine, and practice yoga myself. It is very helpful. I drink ginger tea if I am nauseated too. But I am not going to start dishing out the cash to by extra concentrated blueberry juice or alkaline water when there is no scientific evidence that those have any ability to cure anything. Homeopathic medicines are a complete sham and essentially the equivalent of holy water.

      Yes, I am lucky to have a good doctor, but I am also lucky to live in a country where good medicine does not depend on wealth. It tends to in the American system but not so much in ours. Our system doesn't come without problems but access to a good doctor isn't dependent on wealth.

      Thanks for your well considered reply and for still offering me kisses when I have stomped all over alternative medicine. ;-)
      xoxoxoxoxo

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    2. no prob - i asked because i feel often puzzled when i discover that someone is very/chronic ill.
      this dubious overpriced stuff you described i would´t use myself. this is only made to make money. but i´m with the ayurveda - every thing influences our body and the body the mind and vice versa.
      our health system is like the canadian in theory but if you not want to be treated like a thing and number you have to be wealthy.....
      more kisses!!!!!!

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  8. I'm sure these people mean well ... but honestly it's a bit insulting to your intelligence ... if the cure was as simple as their bright idea, don't they think you would have used it years ago?
    xx

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    1. LOL-yes that is exactly what I feel and often want to say to them!
      xoxoxoxo

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  9. I'm sorry about your condition. It seems like talking about it helps you, so you should do that as often as you like.

    I've had clients with Chronic Fatigue Syndrome and learned about that from them. I didn't know what M.E. was until I followed your link. In talking about this subject, it would help us to know what the acronym stands for or to give us a little basic information so we can understand the kind of condition you face.

    The world is full of misinformation and bad information about subjects like this. I sympathize with your impatience over stupid suggestions.

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    1. Thank, Ally. It helps me to feel that from my experience with this illness I may be able to help others with it. Helping others is something I am compelled to do and one of the ways I can help is to make it better understood and more known. When I was going through my divorce my lawyer, who was a kind man, tried to be sympathetic but he didn't understand it well. One day I broke down in tears in his office because I couldn't cope with some forms he wanted me to fill out. I just couldn't make my brain work and it was embarrassing for me. One day, he asked me what I did with myself since I wasn't working and asked if I went skiing. I had to patiently explain that no, I don't go skiing on my days off, it would be a good day if I can do the grocery shopping or some housework.

      M.E. stands for myalgic encephalomyelitis and basically refers to the condition being an inflammation of the brain

      CFS-Chronic Fatigue Syndrome is a complicated label. It came into existence when insurance companies in the US renamed M.E. for what are apparently dubious reasons. It is reportedly something to do with coming up with a more vague term so as to make it more difficult for sufferers to get financial coverage. Essentially the term CFS is now a sort of holding ground. It isn't an illness itself but is a label used when an illness is obviously present and the predominant symptom is fatigue that persists over 6 months. Patients diagnosed with CFS should then eventually receive a proper diagnosis and because it is often M.E. they are eventually diagnosed with most countries now call it CFS/M.E. A few people may find out that they don't have M.E. but perhaps lyme disease or something else similar.

      Thank you for your well considered reply to my little rant!
      xoxoxo

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    2. You're right, of course. CFS includes several different illnesses. In our area, Lyme Disease and environmental sensitivities are quite common and usually lumped into that category. It's good when you educate people about your condition; it opens their minds a little more.

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  10. Everyone does have the best intentions at heart but I hear you. Personal health is just that, personal and we all choose to deal with it in our own way. Everyone seems to have "the answer" to all our problems. If it were that easy maybe they would cure world hunger and provide world peace.

    Way back when I sat in a Quebecer "specialist's" office only to have him tell me and my husband that the fibromyalgia I had been diagnosed with in Western Canada and was making my life miserable was an, "imagined illness" created by Anglophone sissys. Or something to that effect. Needless to say...I didn't go back there and I don't miss la belle province one bit.

    bisous
    Suzanne

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    1. You must have wanted to slap that Quebec specialist! He is clearly a fool and quite wrong! It's unfortunate that such doctors do exist but I think they are less common now and the newer and younger doctors better trained.
      I"m sorry that you suffer from fibromyalgia and I know it is not in your imagination!
      xoxoxo

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  11. Thanks for sharing this very informative post. We live in a world where people would find ways to make money even to the extent of preying on people's situations. That is why all these so call juices and potions are being marketed today. I can see why you are frustrated.

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    1. Yes, it is definitely a way to make money from gullible people, and also the well intentioned people who are hopeful of a magic cure participate in spreading the misinformation. It's okay when we are free to just say no thanks, but some people are more gullible and vulnerable than others either because they are desperate or poorly educated. I have the ability to say no, but to have someone then imply that my refusal means I am not really trying to get better is quite irritating!
      Thanks for reading my post and taking the time to leave a reply!
      xoxoxo

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  12. I am not skeptical at all, in fact, I may be too trusting. However, when it comes to your massage therapist, I would be annoyed, as well. I might even say, I am here for a massage, and I prefer to relax and not talk during my session (aka, shut up!) I get they are trying to help, but what works for one does not always work for another!!

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    1. Trusting is one thing, but easily parting with you money on every magic potion someone suggests might not be a good idea. I am inclined to think you would be more skeptical when faced with having to pay for something that is a shot in the dark.

      To clarify, the massage therapist didn't offer all the unwanted advice until after the massage was over, though there was nothing relaxing about it as it was deep tissue massage which is painful. I would not mind if he had chatted then but he didn't as he was concentrating on what he was doing and he did it well.
      xoxoxo

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  13. Well, I guess I don't need to tell you I can relate. It's no picnic, this chronic, permanent illness thing. I take lots of pharmies just to maintain my current level of Palsy rather than live in a permanent fetal position. Nope, no gun at all - but you gotta live like today is the best day of your life, because it may be just that. I'm glad you're blogging, and modeling your wardrobe, and giving me impetus to do better. I think you truly might be the Director of Awesome ;-)

    Alicia
    spashionista.com

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    1. Dearest Alicia, I give YOU impetus to do better? Surely it is the other way around! I am sure that you can relate, and although I have lived with my condition for most of my life, you have lived with yours always. I'm glad you have resources that allow you to function and do things you enjoy and share these things with us on a blog. I love your positive attitude, your compassion and your beautiful smile. Thank you for being a bloggy friend!
      xoxoxo

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  14. I'm glad you shared this, as an insight into your illness and the helpful types who mean well but drive you up the wall, I can't even begin to imagine how tough all of this is for you especially when you are bombarded with cures from professionals such as the massage therapist, it really does take advantage of people especially when you are stuck with them because you are being treated and unable to leave x x x

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    1. Yes, shutting me in a room , making me take half my clothes off and then telling me I should be using alkaline water is not the nicest thing to do but I know he meant well. LOL
      Thanks for reading it and taking the time to respond.
      xoxoxoxo

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  15. Oh Shawna, I hear you - people can be so annoying! I say it as an expert - 'cause I am people too! Well, sort of, anyway.

    Hugs to you, be well, stay cool and ignore those who annoy you! It's hard, so ranting about them is a good solution. Maybe next time you'll find a cute massage therapist, and being with him naked in a locked room will have the whole different vibe! :)

    Love you dear friend!



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    1. LOL-well I am a people too and can be annoying myself sometimes. I don't think we have any cute massage therapists in town, but I'll keep looking!
      xoxoxoxoxo
      Love you too!

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  16. Thanks, Shawna, for this information. I've learned a lot in reading your post and most of the comments. I find it intriguing to understand why the body reacts this way, and what it's reacting to. I heard an interesting discussion on the radio about the role of microbiology in our bodies - fungi and bacteria - and that modern medicine doesn't really understand the effect of things like that on all the systems in the body. I wish you luck in finding the right balance so that you can have more control over ME and not the other way around.

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