Ignorance isn't bliss - it's toxic!

Here we go again.

Sorry this blogpost may not be very thorough, spellchecked or rational.

Just seen this in today's online Daily Express in Dr Rosemary Leonard's column "Getting to the Heart of Medical Matters":

Q After a flu vaccination my 45-year-old son began suffering muscle weakness, fatigue and lethargy. Numerous blood tests and visits to his GP followed and he was told he was suffering symptoms of ME but no help was offered.

Can you guess the content and suggestions?
Of course you can. No peeking.

1) the flu vaccine it is unlikely the jab is to blame as it does not contain any live viruses.
2) cognitive behaviour therapy (CBT), counselling and physiotherapy can be helpful along with painkillers for muscle pains and also antidepressants which can help boost mood.
3) One of the most beneficial treatments is graded exercise where the patient has a specific programme to slowly increase the amount of activity they do each day.
4) Reducing stress
5) a healthy diet
6) reducing alcohol

I'm not denying there will be nuggets of help there in among the old misguided anti-fatigue measures. But the lumping all diagnosed M.E./CFS cases under the same hallucinatory umbrella is getting us nowhere nearer to awareness of the severity of the disease in many cases. Nowhere nearer to a diagnostic test. Nowhere nearer to effective treatment. Nowhere nearer to a cure for any of the neuroimmune illnesses that fall under the influence of NICE's idea of M.E./CFS.

My own M.E. (yes, that's anecdotal, I know, I know!) symptoms, even before diagnosis and while still able, intermittently, to work, were ALWAYS worse after the annual flu jab (as a T1 Diabetic in the "at risk" group) and I always got a panoply of bad (non-flu?) viral infections both before and after the jab. It was the week following my jab in 2005 that I collapsed and became bedridden and housebound for the best part of a year and from which though improved, I have never fully recovered.

My GP sent me for 2) CBT and 3) GET. At an NHS "CFS/ME Clinic". So patient "fully compliant".

Even the OT admitted by the end of 6 months or so, that it wasn't helping me to be cured or really improved. Why? Because it was clear to her from the off that I wasn't depressed. Wasn't "frightened of doing too much". Wasn't "deconditioned". Didn't harbour those "false illness beliefs" so beloved by those who think the root causes of M.E. include psychological difficulties.

I couldn't even make the excruciating journey to the last GET feedback session because it was making me more ill. The OT could see I was motivated to return to work and my happy, successful, joyous fully functioning previous life. I had to be all but forced to take early retirement, for goodness sake. On what planet is that a "lifestyle choice"???

I had low dose amitriptyline (antidepressant) to help with relaxing painful muscles alongside painkillers like aspirin, ibuprofen and paracetamol. They did nothing for me but make staying awake even harder, weight gain, fuzzy headedness, etc even worse. So in the end they were discontinued. After all, my mood had never been low.

My mood had never been low, that is, until rationally I worked out the state of play with M.E.  No, I, like so many others, did not choose this diagnosis and knew nobody with it until much later on! Then, seeing my career, my freedom, my credibility as a fully-functioning citizen, my very truthfulness questioned by society as a whole, my mood did dip at times, understandably, till I understood I wasn't alone with this variable but very characteristic set of suffering symptoms (of which "fatigue" is quite low down the list, thank you!!!)

I had been eating healthily for many years, most of my adult life, as an insulin-dependent diabetic. That's a "tick" for number 5.

Number 6? Well, after collapsing with M.E, one glass of wine had me so dizzy, sick and disoriented, my central nervous system obviously knew what it didn't tolerate any more without me voluntarily reducing intake. I could tolerate the occasional glass of wine, or lager, even once or twice a spirit like brandy or vodka at Christmas before M.E. raised its much maligned head. So 6) reducing alcohol is hardly an issue to aid recovery for some of us either.

4) Reduce stress? Don't make me laugh (I've actually been known throughout my life, and every illness and circumstance as having the best positive attitude and a wacky warm GSOH)

 
Tell 4) to doctors, nurses, specialists, consultants, the DWP, ATOS, utility companies, landlords, and every last well meaning delusional who will thrust this article in my face to "help me cope".

I'm coping as I always have and always will. Was my diabetes down to "illness beliefs"? Was my shingles down to "illness beliefs"? Was my recently discovered tachycardia, ectopic beats & cardiac arrhythmia due to my "illness beliefs"? Was my bout of giardia in Bolivia, which may or may not have triggered my immune system's meltdown, my "illness belief"? Is the space in the teeth of my lower jaw (where I now know my great grandfather had an extra tooth) down to my defective "illness beliefs"? So what's the likelihood I've suddenly developed something that has no possible physical cause?

I'm coping. Pacing. Enduring. Hoping. Thankful. Optimistic.

But when are you going to actually treat my cardiovascular, immune, autonomic, cognitive disease? When are you actually going to prove you're listening to 250,000 people in this country and so many more worldwide? When will children and young people with M.E. stop dying from something you say  has no Proper Robust Reason?

When will you cure me, or just fess up, shrug at me with a look of condescending pity and hand over the cyanide pill? (N.B. Jokey sarcasm alert - you can go on dismissing my M.E., but you will NEVER change who I am inside!) :)

M.E. in the media: why let the truth get in the way of a good story?

Myalgic Encephalomyelitis is not a mental disorder.

Let me start with the simple fact. Medical research has shown it. The World Health Organisation has recognised it. Everyone with M.E. knows it to their cost. How much simpler it would be if we could walk away from M.E. after a cosy chat about our "illness beliefs" and a few phased-in press-ups!

No right-thinking M.E. sufferer wants anything but a cure and their former health back. For children and young people who never knew a healthy life before M.E. struck, just the cure and a happy normal future would do.


We do not want psychiatrists harmed or threatened. Of course not! What are people thinking? Like me, none but a handful of (as yet curiously unnamed) desperately sick individuals at the end of their tether, would wish harm on anybody. Let alone issue death threats. This is appalling to us all.

But smokescreen coverage of the "victimisation" of those seeking to turn back the clock to the days when the mistaken insult "Yuppie Flu" reigned in the minds of a largely uninformed public, has pothered up around the illness that has stolen our lives and livelihoods for so long on a daily basis. While this mass media story goes viral, it is in danger of snuffing out bona fide campaigning for scientific medical progress into M.E. treatment and cure. That would be the real tragedy.

M.E. is not a mental disorder.

It bears no resemblance to bi-polar depression, Munchhausen's By Proxy, schizophrenia or any other mental illness. Any more than M.S. was ever really "hysterical paralysis" or Tuberculosis was ever cured by shoving dying men and women out into the sun to do them good in spite of their wrong "illness beliefs"!


M.E. is NOT a mental disorder.


There seems no end of confusion about this fact. Not helped by the recent onslaught of misinformation, half-truths and lies in the media.

Let me repeat in case anybody is still in doubt:

 M.E. is not a mental disorder.

I understand the confusion. There's a whole Tower of Babel being erected in the press with a confusion of voices shouting from their own corners out of vested interest.

Scientific research is costly. More costly than the cheap talking therapies and often hugely damaging regimes of exercise forced on muscles and mitochondria that are made all the more sick by such tactics. Those M.E. patients like myself who have always driven ourselves to our limits however we felt, have already discovered to our cost the dire consequences of such determination to show our bodies "tough love"!


Scientific biomedical research into M.E. is expensive. But it's not a luxury. It is vital.

So far it has shown the truth that M.E. is a physical illness, not some vague conglomeration of imaginary symptoms making sufferers turn from hard-working, articulate, driven, fully-functioning pillars of society into benefit-bludging, lazy hypochondriacs. Who on earth do you think you are labelling? Are your memories so pathetically short? Where were you knockers, disbelievers and haters when we were saving your lives in the operating theatre or baptising your babies, successfully fighting your lawsuits or striding along optimistically helping to change the world where we all paid tax while we could? That was us M.E. sufferers, just like you! We were (and would love to be again!) your co-workers, crisis solvers and your children!

Recent articles in papers like the Sunday Times and Observer, may have misled you. They probably intended to. By doing so they enable the government, DWP and paid psychiatrists to feel justified in forcing some of the sickest and most vulnerable people in our society, with an illness every bit as disabling as M.S. or polio, into work they are too fluctuatingly, severely ill to fulfil without relapse, or into cheap and ineffective forms of treatment, which is actually designed to manage mental health problems, or psychosomatic syndromes yet often causes M.E. patients to crash and burn.

These treatments include the cheap-to-fund non-invasive and unscientific cognitive behavioural therapy (CBT) or graded exercise therapy (GET) aimed at weaning patients off damaging sickness-perpetuating habits and thought patterns. This does not work with physiological, multi-systemic diseases like M.E., M.S., Cancer, Tuberculosis, Polio, Myasthenia Gravis or Diabetes Mellitus. So why is this the only funded "treatment" available for M.E.? Why? How can our mental aberrations make us too dangerous to donate blood?



Contrary to what has been stated in the media, please listen to the words and understand:

Neurological DOES NOT mean neurotic. 


 Physical disease DOES NOT mean psychological disease.

Physiological illness DOES NOT mean psychosomatic illness.


It really is that simple.

M.E. has been classified by the World Health Organisation and M.E. researchers who are not tied to proving a money-saving, non-scientific theory to keep truthful enquiry at bay as follows:

a serious multi-system neuroimmune disorder affecting the central, autonomic and peripheral nervous systems as well as the immune, cardiovascular, respiratory, neuroendocrine, gastrointestinal, musculo-skeletal, visual and reproductive systems. 


Is that clear enough?

Yet again the papers have rushed into a feeding frenzy on the say-so of certain individuals, borrowing each others' tag lines and taking the easy route to a sensational story.

Why let the truth get in the way of a good story?


Why?

Unfortunately it's too late to ask those who have already died of the effects of M.E. like Sophie Mirza, Lynn Gilderdale and others who make up the 3% of M.E. patients for whom it proves fatal with deaths due to tumours, cardiac failure, brain death and liver failure, sudden collapse after overexertion or exercise and the effects of a slowly worsening illness or, horrifyingly in the 21st century, inappropriate medical "care". Around 30% of M.E. cases are progressive and degenerative. More info on these stats: The Hummingbirds' Foundation for M.E.


Why let the truth get in the way of a good story? I think we all know by now why it must not be allowed to.

Let's go on raising awareness of M.E. in whatever peaceful, respectful but dog-with-a-bone determined ways we can, if we can, whenever and however we can.

If you're still in doubt how medical science is still being ignored at the highest level of UK decision-making in favour of the dangerously contrary all-in-the-mind model of M.E., you can read this post in the excellent blog Dancing with the Sandman:


Letters from Malcolm Hooper Emeritus Professor of Medicinal Chemistry University of Sunderland, to Iain Duncan Smith MP DWP and Andrew Lansley MP Sec of State for Health