Food Hospital on Channel 4 last night caused such a shock wave of disbelief and anger through the online community of Tweeps with M.E. It's a wonder it wasn't top trending! Ulcerative colitis only got in the trending list yesterday, of course, because the news had broken that celebrity UC sufferer Darren Fletcher, Manchester United footballer, announced the disease would force him to take a long break from the game. M.E. hasn't made such headlines since the last of the umpteen times Emily Rantzen claimed to be "cured" by the Lightning Process before relapsing again!
Food Hospital's episode including "Chronic Fatigue Syndrome" came on the same day as BBC Breakfast revealed 1 in 100 secondary schoolchildren were "sick with M.E." This, of course, after being "diagnosed" in haste with some then "fully recovered" after six months. No Canadian Criteria used, naturally, where a whole range of diagnostic symptoms that include much more than mere "tiredness" have to last for at least six months anyway!
Viewers to the Today (link on yesterday's blogpost) programme were fed the old lie that "M.E." (the auto-immune, neurological, severe and chronic endocrine disease) was identical to the woolly umbrella term "CFS" (a collection of symptoms that can apply to any number of different ailments). All the old myths and dangerous half truths.
Then comes "Food Hospital" with its patronising, simplistic smorgasbord of pseudo-science. People wonder why PWME (People with M.E.) despair, faced with this relentless tide of misinformation. We all needed to take the phones off the hook last night to avoid the calls of well-meaning "friends" seduced by this plausible tosh, telling us they'd just seen a mainstream programme that showed a "cure" for our oh-so-annoyingly persistent multi-systemic physical disease!
The cure? Simple! The girl (Steph) who had been feeling less than well for some 13 years when she was a student, quite evidently had Chronic Fatigue Syndrome. NOT M.E., though no doubt one of the 52% of GPs "confident" in diagnosing M.E., or the 48% who still can't be bothered to learn about it, had told her she had M.E. In no way is this that poor lass's fault. I'm sure we all wish her well and health to enjoy the rest of her life.
The food experts, while peddling all the usual lies that M.E. could still be psychological in nature rather than physical, took a rough survey of Steph's perceived symptoms. Turns out she wasn't eating regularly. Most of her vague headache symptoms, aches and tiredness were down to blood sugar issues and dodgy eating habits.
Hey presto! The prescription?
1.Nibble a bit of dark chocolate (serotonin levels, blah blah blah, nothing new there) which she admitted on camera actually had no effect whatsoever.
2. Regular healthy eating. Which most of us, not least those of us with co-morbid conditions like Type 1 Diabetes, have followed with absolutely no effect on other complex M.E. symptoms.
Next thing we know, Steph is swimming. Slow but sure signs of recovery. They had to stick a bit of Graded Exercise Therapy (GET) in there, to placate the Psych school, didn't they? She's back at work, too, and Bob's your "fit for work" uncle! DWP kept happy (if deluded) too! Sorted! Simples!
-CFS caused by the above - cured. Tick.
-M.E. caused by faulty neuro-immune/endocrine damage - no dice. Cross.
Twitter was on fire. For genuine PWME, knowing we have each other's understanding is one of the few things that stop us despairing. Stop us going crazy under the added pressure of the media and government's refusal to show M.E. as it actually is. Not the way it would be convenient; that is, if it could morph seamlessly into Chronic Fatigue and then melt away with a bit of diet and lifestyle gobbledegook leaving patients glowing with health and grateful to every quack and charlatan.
WARNING: Don't watch the codswallop on the first link below if you actually have Myalgic Encephalomyelitis rather than a bit of mild "chronic fatigue" without
a) watching your blood pressure
b) having a pillow to punch and/or bite
c) being in a mood to laugh rather than cry
d) realising some of these buffoons will one day have to eat their words
The Food Hospital Series 1 Ep7 on Channel 4 First Broadcast 8-9pm 13th Dec 2011 Serious chronic neuro-immune disease or a bit tired and hungry? PWME watch at own risk! Opinions expressed on this blog are my own.
Dr Esther Crawley talks to John Humphreys on BBC Radio 4 (John Humphreys surprised it can be genetically inheritable, and happy to revive "Yuppie Flu" and "M.E. properly called Chronic Fatigue Syndrome" etc. Makes you realise what he was actually thinking when he was in the flat of a woman with M.E. in his benefit cheats programme.)
Dr Ian Gibson talks on BBC Radio Norfolk about who & what is really behind this refusal to accept M.E. as a neurological disease Dr Gibson is honest about the real vested interests that insist M.E. is psychiatric. Namely the man who "runs the whole show." (*cough* Simon Wessely ??? *cough*). Surprise, surprise. So refreshing to hear someone with real expertise saying what so many have long suspected. We're not out of the woods. But somebody must be running scared by the truth!
Thanks for this comprehensive post, I have yet to listen to Esther, don't think I could face it!
ReplyDeleteBrilliantly written and so so very true. You articulated everything I wanted to say, thank you! x
ReplyDeleteLove this write-up of what goes down in M.E town
ReplyDeleteI left a comment on the Food Hosp Facebook page late last night, today it has been removed. My comment was polite though critical, I guess they linked to my blog and didn't like what they saw. If they can't take criticism they should properly research the illnesses they seek to represent!
ReplyDeleteThank you all so much for commenting. It's knowing we're not alone in living with the unrelenting struggle of M.E. that keeps me going. I just keep trying in my better moments to say what we all need to hear and hold on to!
ReplyDeleteDisgusting that your comment was removed from the Food Hospital site, NMJ. Your wonderful book still inspires me to know it's worth articulating the truth of this crushing disease, however we can, till everybody understands. Food Hospital obviously subscribes to a very different agenda we know all too well by now.
But in the end, they WON'T win. Because we are still here, and we won't lie down and shut up. While ever we can put two words together through the brain fog!
Thanks again.
I did swear in a tweet on Tuesday so maybe they were punishing me by deleting my FB comment;) I'm probably blacklisted as mad and bad for standing up for the truth... I did delete the sweary tweet later, but they had just peeved me so much with their reference to this young woman's 'perceived fatigue'(I wondered if the Wessely gang had scripted that part). I really hate that my energy was hijacked on Tuesday night, tweeting them, fighting their nonsense. I often wonder why I bother, but there is so much at stake here, and a lot of people watch Food Hosp, so Channel 4 should be made to realise that it is spreading misinformation about ME, continuing to conflate with idiopathic fatigue. I did suggest the presenters read my novel as well as the International Consensus Critera, but I won't be holding my breath.
ReplyDeleteAfter all the tweets about this programme I watched it and was so shocked. Well duh if your not eating regularly then of course you are going to get fatigued and suffer headaches etc - with the best will in the world she did not have ME maybe she did at one point and was lucky to be one of those few people that do get better and she didn't realise because of her bad habits - I wish her well and am not angry with her but the program that did not investigate this serious illness properly and its ME not CFS.
ReplyDeleteIn my late teens I was pretty much bed bound I discovered diet helped some of my symptoms - regular eating and lots of it just to give me the energy to get dressed (well that's when I wasn't sleeping for 20 hours at a time) - that was it. Sometimes I would go out, I looked normal but then its what happens behind closed doors that people dont see. It took time for me to learn my new body and its limitations. Now in my 30s I now have a full time job - how? I got a degree thanks to a very supportive university and well I am not cured (never will be) I simply dont have much of a life everything is balanced and paid for - I tend to explain it to people that my body is a battery if I dont get the rest I need I will simply 'run' out and crash. I am lucky I have a supportive husband and work is also supportive. My ME is now mostly on the mild scale. For me it has got worse again over the last few years I went out of balance as my priority was focused on my terminally ill mother, I am now starting to regain that balance (hard as my Mum was often the one to reign me in - as I tend to have periods where I want to do everything and join in).
I wish fatigue was the only thing I suffered but well there's the pain, the headaches, the hypersomina mixed in with a bit of insomina the rubbish immune system, increased intolerances and allergies (for me these are to medications), alcohol intolerance (occasionally I can have a little without being violently ill), the fact my body cant regulate my temperature very well, muddled words, slurring, cognitive disfuntion (the list goes on - I am sure that everyone can identify) and then all the companion things that I now have IBS, raynaulds, PCOS, depression.
ARGH we are not just tired we are ill give us the respect that we deserve.
Oooh a little rant and I feel better :)
We are not alone and we will get people to listen. I have always been open and honest to people about my ME and activity encourage people to ask me about it, but I warn them I am only an expert in my ME, what works for me might not help others but its by talking, writing, reading that we learn and have hope. We are a mass collection of 'experts' we need to help and support each other.
We will get there, the truth will come out x
I so identify with everything you've said here, Littlemouselilly (you, me, and everyone with full-blown Myalgic Encephalomyelitis as opposed to a spot of "chronic fatigue" caused by other things, no matter how real!) Thanks for commenting. After the rubbish on Food Hospital it was refreshing to have M.E. talked about honestly by actual sufferers on The Wright Stuff the following day. (Even if blogging about it in detail left me crashed for days afterwards!).
ReplyDeleteWe patient "experts" really do need to keep rooting for each other. Together, like you, I believe one day the truth will be no longer be in the hands of the uninformed or those with vested interests. We just need to keep doing our bit with whatever health and strength we have whatever skills we have at expressing our reality XXX
I came across this blog by accident and notice how you are all suffering from ME. I was BAD and 50 when it started - I spent every ounce of energy looking for a recovery. I found one - and although my body still needs maintenance I now lead a full life.
ReplyDeleteYour hormones are probably out of sync. - something the doctors don't recognise easily due to the limitations on testing etc.
I suggest that you may have 'drop-dead flu' caused by the separation of hypothalamus and the pituitary causing weak immune system. This separation will cause the thyroid and adrenals to be unbalanced and it goes on. I am not doing this for 'hits' - I don't need them - but see WWW.CUREFATIGUE.NET and ask me any questions you wish