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19 February 2011 @ 01:20 am
All aboard the loltrain.  
There's been a new report published that suggests M.E. sufferers benefit more from GET (Graded Exercise Therapy) and other, similar techniques than pacing themselves and adjusting their needs accordingly.

I can't actually begin to express my rage on this subject without spontaneously combusting. So, let's get a few things straight, from a personal perspective:

- I've had M.E. for nearly fourteen years, now. I was diagnosed when I was 12, after a spate of infections left me completely unable to get out of bed on some mornings. It took eight months to fight for a diagnosis - which is nothing in comparison to some of the people I know who have had it for decades and are still begging for acknowledgement.

- M.E. has been classified as an illness that does exist, by WHO - incidentally, it's not under 'Psychological Disorder What Makes You A Bit Tired', it's a complex, neurological condition that has roots elsewhere (hence the recent XMRV findings and blood donation banning).

- Exercise exacerbates symptoms. It is, in fact, a diagnostic marker. By exercise, what I actually mean is general, day-to-day living not, as some might think, running the London Marathon or attending the gym three times a week. If you can't brush your hair, or shower regularly because two weeks ago you went out shopping with a friend for an hour, you're probably not just a bit under-the-weather.

- In fact, exercise is actually bad for M.E. sufferers and can and will produce massive, debilitating relapses that render the individual completely incapable of sitting up, swallowing or even, in some rare and horrifying circumstances, breathe on their own.

- There are psychological factors to this illness that I am not going to deny; if you spent half of your adult life trapped indoors, wouldn't you get depressed? Agoraphobia can come into play when this occurs, as anxiety issues about presenting oneself to the outside world start to become a concern. I, myself, suffered with this to such an extent that I would refuse to leave the house for weeks at a time and, if I absolutely had to go outside, I would wear as much concealing make-up as possible in order to look healthy.

- We aren't afraid of exercise. Actually, it's quite the opposite - most M.E. sufferers, until their deterioration, enjoyed a healthy, active lifestyle. Some were University graduates with top honours, others were once high-flying business executives, and others still were pursuing regular hobbies like tennis, gymnastics, football, fitness and so on, in between bringing up a family, or attending some level of education. Most of us would give anything to be able to revert back to a former life when energy wasn't about how many 'spoons' were allocated for that particular day, and whether they were enough to allow us anything more than getting out of bed and sitting upright.

- For those of us who are not as affected as others, we still experience our own set of symptoms that make going that extra mile potentially dangerous: I attend University, for example, but that does not mean I can have a regular, active social life without massive implications. During essay periods, I often find myself unable to do anything other than work or sleep, struggling to even attend lectures, so as to achieve marks that are good enough. For others, it's about working whatever job they can find so that they have money to live off. The benefits system is currently reviewing policies and recipients of what was known as Incapacity benefit, and therefore, have pushed some genuinely poorly people back into working because they are afraid of being seen as 'lazy' and 'scroungers'.

- M.E. is an illness that affects children as young as five or six, and adults as old as sixty or seventy. It is most common in women (2 in every 3, give or take), and usually develops during times of personal trauma, physical illness and injury, which thus leads a lot of people to believe that it is a matter of 'getting over' their health barrier to achieve normality. In some cases, the sufferer is well, is struck down with a 'flu-like virus or a glandular infection, and they never recover fully. For some, a lifetime of health issues has culminated in the diagnosis.

- Finally, in my time of desperation, I have tried all sorts of nonsense to help my health: Cognitive Behaviour Therapy, dietary exclusion (to the point of a vegan, sugar-free existence), herbal remedies (ginseng, gingko, valerian, etc.), conventional medication (at one point, I was taking up to 20 tablets a day), psychological intervention (in case I was, actually, going mad), Graded Exercise Therapy and just throwing myself back out into the world. None of these have conclusively cured me, or aided me in any way. At the very best, all I got was a mild relief from pain with prescribed medication and a way to manage some of my other, associated problems. I haven't resigned myself to the scrapheap, as I am doing a full-time degree, I live independently of my family and I am in a stable relationship. I'm nearly 6 months pregnant, so I can sustain another life alongside my own, and I sometimes like to go for walks when the weather is favourable. On my bad days, I can't leave my bed, and am in so much pain I am physically unable to keep from crying; sometimes my brain forgets to work properly and I leave the oven on in my flat, or I forget to put something away; I often struggle to maintain a regular sleeping pattern or cycle; my joints permanently ache; I occasionally find it painful to brush my own hair; at my very, very worst, I have been unable to swallow without pain, or eat without needing a nap. I live a half-way life between health and total sickness. I do know, however, that this illness I have needs to be taken seriously. We need more research, more funding and, above all, more understanding. If you review your diagnostic means, you will lessen your chances of a wrong diagnosis - that will mean less people will rely on benefits, and more will be appopriately cared for. But without the money or the consideration, that won't happen. So, screw those articles on exercise, and 'school phobia'. Raise some positive awareness and one day, I'll stop telling the world how tired I am and will, instead, share how energetic and busy my life is.

Rant OVER.

Kept public for anybody interested in sharing this.
Current Location: M13
Current Mood: annoyedAnnoyed.
caitlin baberaittydunn on February 21st, 2011 03:30 pm (UTC)
I have fibromyalgia, aren't they basically the same thing? And I didn't hear about the not donating blood thing, can you tell me more?
...oh_kimberley on February 21st, 2011 11:22 pm (UTC)
Fibro has similar but not identical traits to ME, as Fibro is certainly more pain-based and fatigue is secondary to the sheer agony of fucked nerves. For ME sufferers, there's a chance that XMRV (there's a lot of papers on it now, so google will be your friend) - which is retrovirus - can be linked and therefore, blood donations are now banned. The excuse the UK government are using is that it's 'not beneficial for the sufferer' to donate, but it would be worth considering the possibility of passing on the virus through direct blood, as it's obviously not sexually transmitted. Canada has the best documentation and guideliness for ME/Fibro, so if you can locate a message board, post up your details and your wish will be their command.

When you were diagnosed with Fibro, were you tested for the pain-points across the body? That's usually the done thing. If not, you might want to check you definitely don't have ME symptoms because they can be misdiagnosed, or Fibro is secondary.