While people with M.E. look forward to a breakthrough in medical research and treatment, with standard non-treatments offered by many doctors and the "M.E. Clinics," usually no more than CBT and GET, we are often forced to take our treatments into our own hands.
Most of us have learnt to "pace" ourselves, when we can do so, to maximise our energy and minimise pain and other symptoms. Normal painkillers, like Ibuprofen and Paracetamol are limited in their effect, in my personal experience. Nothing touches those nerve pains, like having toothache in your neck, chest, wrists, back etc. Many touted "M.E. treatments" out there are often disconcertingly varied in their (reported!) success rates or prohibitive in their costs.
When I was first ill, I learned to deal with the pains all over my body and feverishness and swollen glands all through the night by lying (as best I could) on a stick - yes, just a normal polished wooden walker's pole. Mad? It worked for half an hour at a time sometimes, as the pain of feeling its hard lumpiness under me helped me to filter out the more diffused all-over pain I could not put my finger on or soothe in any way. Then I would wake up, back where I started, but at least I'd had a few minutes of sleep!
Over the years, I have tried Melatonin. I asked my doc about it, as I knew from researching it, that in the UK, at least, she was not allowed to prescribe it. She said as much, so I quietly sent for some online and took it for as long a period as I could still afford it. I had some sleep. Whether from the Melatonin, or sheer exhaustion or going through a better period, impossible to tell.
I drank pints of Berocca over the years too. Expensive but readily available fruit flavoured drink designed to restore "You, but on a good day" as the popular advertising campaign proclaims. I did have good days. But bad ones still arrived. As with many treatments aimed at those with no better options, my purse became emptier as my health continued to fluctuate.
My sense of humour and positive spirit ( not to mention what we Christians call "prayer" and "Giving thanks in every circumstance"), got me just as good results, for free, as did time, and whether or not there was an "R" in the month or a "Y" in the day!
Last year, in a better period for me, I sent away for a special powder called ME-Relief, designed by a man, Paul Carpenter, who believed he had skills in such matters, as well as being an M.E. sufferer himself. He had devised the powder based on what he knew of the body's chemistry and the science behind the illness and immune system, such as it stands. That, and his sheer desperation to be well again.
Again with hope and an open mind, I took the powder as prescribed through many days until the trial starter pack, at its reduced introductory cost, ran out. I still had bad days and weeks when I could manage very little and symptoms were disabling. My good periods were good when they were good, and bad, as ever, when they were bad. Please understand I am not saying that anything does or does not work, and if you believe it safe, then everyone has to decide for themself what may do them good. I object, however, to giving undue credit to substances for my regular oases of slight improvement. I have those same oases and crashes without any outside intervention or cost! The powder certainly didn't make my symptoms any worse or better in the end, but I bless him for his initiative. His website's support and information is a lifeline in itself to those struggling to understand and live with M.E.
The "Lightning Process", a hot potato of frighteningly emotional proportions in the M.E. community, is known to have transformed the lives of some and left others poorer and unhelped, longterm. I haven't tried it, so can't give my opinion either way. Others in the media are very quick to sing its praises in "curing" them, only to relapse (as I have done for at least the past 20 years, as well as going into remission without apparent intervention) before re-emerging for the next interview a few years later as miraculaously "cured" once again. It's always "once and for all" at the time, of course. Pyramid selling techniques in some "cures" mean those who find it helpful become evangelical practitioners of whichever course helped them, or, if an uncured "failure", they are quietly brushed under the carpet and not mentioned in statistics for fear of being "negative".We must draw our own conclusions, and will do so.
The Perrin Technique is another treatment involving among other things a method of massage to drain lymph nodes and provide stimulation and relief which I have tried. It feels good, when you can bear to be touched, but, for me, had no lasting measurable benefit, though I still get my Mum to press the suggested Perrin points when I'm ready to scream with discomfort and pain!
All along, I have read how NADH-Q (NADH-coenzyme Q oxidoreductase, Coenzyme Q10), a protein that occurs in the human mitochondrial genome DNA is involved in helping with energy matters in the cells. It helps to generate energy in the form of ATP (adenosine triphosphate) as it does naturally in a healthy body. Googling will explain any of this I'm not expressing clearly enough!
Considering the nature of M.E., the seeming inability for your inner battery to recharge, and all the attendant knock-on effects of this, taking this as a supplement seems to make sense to a sufferer.
So here I am. Ready to try something else. A friend whose sister has M.E, told me recently that her sister swears by taking ENADA (NADH) tablets which have given her more energy. Yes, she still has M.E. which affects her life on her bad days, but she believes in the power of these pills to transform for the better.
This week I sent for 30 5mg tablets from Amazon (cheapest deal I could find this week, at least, at £11.90 the box).
Reading medical opinions online, it seems that 10-20 mg is the safe and recommended dosage. At the higher end of this to be effective in touching the complex demands of a body compromised by M.E.
I've taken 10mg as an introductory dosage before lunch. I know I can't afford it regularly, but will save enough to target days when I have particular challenges, like weekends when I have promised to take a service for an hour through to the summer months. Even with a working wage, I don't see how I could do it longterm, but once back well enough to work, might only need it for extra draining challenges?
Summer is often less virus-riddled than winter (often but not predictably, as with most things M.E.-related!), so the tablets have the best chance of helping, perhaps, at this time of year. The clocks have been put forward. The spring equinox is past. The lighter nights are here!
So watch this space without judgment or fear.
Bring it on!
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