I know I said my next blog post would be on food, but after reading some research published today on Chronic Fatigue Syndrome the food post will have to wait.
I saw an exciting headline which said “ME is real. Scientists have discovered specific blood chemicals in CFS patients which are similar to those seen in hibernating animals.” Big sigh. In fact, huge sigh. Since when did hibernating animals feel ill? Maybe this is just the Daily Mail’s take on the research, but if so it’s replicated by the broadsheets, eg The Telegraph.
The cardinal feature of M.E. is post exertional malaise (PEM), ie feeling ill and fluey after exertion, either mental or physical – very trivial exertion like cleaning your teeth. When did this number no.1 diagnostic criteria disappear? When did the no.1 diagnostic criteria become chronic fatigue, which btw is a symptom not a disease and common to many illnesses, eg. depression, cancers, hormone disorders, heart disease, Ehlers-Danlos Syndrome to name but a few.
When did symptoms of immune activation, like sore throats and tender lymph glands, disappear from the diagnostic criteria? When did central nervous system symptoms like dysautonomia disappear from the diagnostic criteria? Why does no-one ever talk about paralysis, or a-typical seizures or new onset dyslexia? Or horrendous muscle twitching, peripheral neuropathy, speech problems, light, sound and touch sensitivity? Or drug intolerance (or in my case complete allergy) and alcohol intolerance? When did the number one symptom for ME become persistent fatigue and nothing else?
What happened to starting ME with a virus or vaccination (ie an immune event) which you simply never get over? What happened to having to rule out primary mental health issues like depression and anxiety before a diagnosis of ME can be made?
This is what happens when you call Myalgic Encephalomyelitis Chronic Fatigue Syndrome. This is what happens when you water down the diagnostic criteria and include just about anyone with chronic fatigue as a symptom. You end up with the focus on fatigue and nothing else.
I was told by doctors that I was so ill I might not make it through the night. Twice. You don’t die from “fatigue”. You are not bedridden, have seizures or become paralysed by “fatigue”. You do not lose your speech or your mental faculties because you are persistently tired. I was not in “hibernation” for 10 years. I was near death for 10 years, every second of every minute of every day. And FWIW I couldn’t sleep a bloody wink.
I haven’t read the actual research paper as I don’t have the brain power. I read on the ME Association’s Facebook page, however, that it’s very exciting research and could be potentially important. But the newspapers still focus on the F word and, let’s face it, the public are going to read the newspaper reports not the actual research. And they’re going to take away from it that we are all cute little hedgehogs, sleeping our days away! I wish.
When am I going to read a newspaper report that tells ME like it really is? That doesn’t even mention depression. That doesn’t drag up the ‘Yuppie Flu’ reference? That doesn’t tell me changing my diet, joining a gym or taking an expensive supplement will cure me? Because when that day comes I’ll celebrate and not until.