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!) :)

The Stigma of M.E. : Daily Telegraph's silly season gets sickeningly serious

'Protesters have got it all wrong on ME' by Max Pemberton in today's Telegraph

So, in spite of false hope over the weekend that this piece of dangerous misinformation had been withdrawn, it appeared in print to rain on the parade of thousands of M.E. sufferers this morning.


When I could get my thoughts together, I respectfully tweeted Max Pemberton earlier:

@MaxPemberton 'ME & stigma of mental illness' I compliantly attended CBT/GET til the OT recognised I was (quote) "Really ill". Still v sick

Many more reactions and comments also appear in response after the article. These restore perspective to counterbalance the depth of ignorance shown here. Sadly, the headline is what many people will register as gospel truth: in shorthand, that M.E. = mental illness.

Middlewood Hospital, Sheffield, formerly South Yorkshire Asylum, more recently near to site of Fairlawns M.E. Clinic

Worse still, though I fully support removing every last ounce of whatever stigma remains for those who live with actual mental illness, this article implies I am ashamed to be associated with mentally ill friends! How is this even legal? M.E. patients are only horrified to be labelled incorrectly, to be denied hope of a future restored to the vigorous individuals we were born to be!

Max Pemberton blithely informs us:

The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist. Most people are more than happy to be seen by a specialist – more than one if required.

I was offered both CBT and GET back in 2006/7 when I was first diagnosed with the illness I had been fighting on and off in boom/bust fashion for more than a decade. My GP said she had sent several patients like myself to Fairlawns in Middlewood, Sheffield, to their M.E. Clinic there. I suppose she was at a loss to offer anything more than a dose of amitriptylene to help the highest dose of painkillers to work. She would perhaps, on reflection, also have been advised to help these Government funded M.E. clinics justify their existence?

Fairlawns Medical Centre, Middlewood Road, Sheffield, with Fairlawns M.E. Clinic, part of the Sheffield Polyclinic

CBT and GET were not mentioned, by name, during my referral to the clinic. I went along compliantly to every session with the Occupational Therapist at Fairlawns M.E. Clinic on Middlewood Rd, Sheffield.

Middlewood is still synonymous in South Yorkshire with old Middlewood Lunatic Asylum, Wadsley, that our forebears knew. But I didn't resist, as this was surely merely a modern M.E. clinic based in the same location. I certainly felt no stigma. I was relieved to try anything that might help me to bear the barrage of disabling bodily symptoms which now frequently confined me to bed or to the house.

The OT received me in a room with helpfully muted lighting. She quickly realised I knew much about coping with chronic illness, from a quarter century coping with erratic hypoglycaemic attacks from Type 1 Diabetes.
 

She learned how I was a resilient, adventurous, successful, popular Methodist Minister. Before ordination I had been a schoolteacher and had later become the first English Methodist mission partner to live and work in Bolivia, South America in the early 90s.

The Fairlawns OT discovered how a long bout of giardiasis had derailed my health during my time in Bolivia, after which I was never quite the same. (I've read since that giardiasis was found in a quarter of US M.E. cases here though have no way of knowing if the link is significant in my case.)

Daffodils in Middlewood Park, looking towards Fairlawns Medical Centre

The OT listened how on my return from working abroad, I continued to work often long hours 24/7 after training at Cambridge in theology and for the itinerant ministry, and was ordained in 1999.

In 2000, still putting my frequent crashes into M.E.-like symptoms down to my severe diabetes, erratic since my diagnosis in 1984, down to my body's regular bad reaction to the recommended flu jab each autumn, down to frequent viral infections, I succumbed to the first of three severe bouts of shingles in my head and neck. I was sick for months with M.E.-like disabling symptoms. My second shingles bout followed in 2004 and the third most recently in 2008.

Fairlawns ME Clinic main reception to Polyclinic, Sheffield

The OT began to understand, that although I completely willingly carried out every part of the suggested Graded Exercise Therapy, filling out the provided charts and talking things through with her on each appointment in true CBT fashion, it was doing me harm rather than healing, apart from the relief of having a professional "M.E. specialist" to talk to. To be clear, the OT explained the clinic was not actually offering a cure, but a coping/pacing strategy, such as I already used for diabetes.

They treated children and adults through the centre, she told me, though I actually rarely saw anyone else waiting to be seen in the gloomy corridor. My Mum, who supported me through each journey and afterwards when crashed, sat by the water cooler when I was in the session. She never saw any other patient either, sitting in the waiting room or being checked in on those long afternoons. Were the others always in the morning? I have no idea at all.

Another M.E. Patient's recent experience of Fairlawns M.E. Clinic, Sheffield 

It was I who called it CBT to the OT, eventually, as no doubt her instructions were not to affirm the patients illness beliefs or suggest any terminology herself to influence my progress or perceptions.

She accepted with sympathy and regret how ill and relapsed these trips out to Middlewood Fairlawns M.E. clinic made me. She wondered after several such draining sessions if just phoning or emailing might do me just as much good, as spending days bed bound after each session because it took me two bus rides and half an hour on the Sheffield Supertram to get to my appointments with her, seemed to be doing more harm than good.

She said that she could see I knew as much as she could tell me in terms of understanding my condition. 

She seemed impacted by my description of my progress as like a tide coming in. The good days and the bad days (in reality just bed bound, housebound days, and self-styled "good" days when I could actually get around to do a little before my whole system was too enervated to carry on again, simply seen through the eyes of an eternally thankful optimist who refuses to moan!) 

She took on board how there were some days when the recovery seemed to come in slowly up the beach like a tide, yet the extra efforts made would then slide me back like low tide leaving me exhausted and in agony among the rock pools. Sometimes during a session she would see me struggling to function, to marshal my thoughts through the brainfog, to sit in the chair and cope with even the muted lighting. 

Once she actually exclaimed: "You really ARE ill, aren't you!" as if this came as a new revelation to her!

What does that tell you about how M.E. patients are perceived?

The so-called experts in these centres are told how CBT/GET is supposed to work, but when they are faced with the real patients, as intelligent and positive as they are, obviously not depressed or mentally ill, they still have to go through the motions and fill in their reports. Is this the truth of it?

When I was too ill to travel to my final session, the only one I missed, the OT sent my final 'end of treatment' report over from Sheffield to go on my medical records with copies for me and my GP. I was to sign my approval before it was finalised. There was also a feedback tick-box form, as I recall. I saw she had written that the "treatment" had been positive and had helped me, and that I was much better. This was far from an accurate reflection of my situation, as I thought she knew!

Sheffield Supertram bound for Middlewood

I wrote back a letter to my OT at Fairlawns reminding her what I had said about my progress through M.E, being not so much a linear improvement but a boom and bust, random tide coming in and out. Every bug I caught or effort I made could still scupper me and have me every bit as ill as before. The CBT was at best a comforting chat that was agonising to travel to. The GET was structuring what bits of activity I could manage at times, but were not achievable on other days, whatever my graphs and tick charts might say! 

It had been helpful to talk through coping and pacing strategies with an understanding professional. But it had not actually cured my illness in any way, any more than appointments with my diabetic consultants actually "cured" my diabetes. We could learn from each other, patients and doctors, but the diseases remained uncured. Neither diabetes nor myalgic encephalomyelitis is solved by these purely psychological interventions.

I would say there is value, limited as it is, in CBT, on the days, if there are such days, when you feel up to it. Others who are bed bound permanently and intubated would not even be able to contemplate such approaches, let alone benefit from them! Many tell of the deep damage that such approaches have done to their already fragile health, as they did to what little strength I had at the time. It cost more in post-exertion collapse than it helped in any way.

But suddenly, we are informed by Max Pemberton that:

It wasn’t until psychiatrists such as Prof Wessely started treating the condition psychologically that real progress was made. 

  

Some major brainwashing seems to have taken place here. Or maybe it's simply that headlines that have sensational death threats, hate campaigns, protests etc sell more rags than column after column of facts about scientific research or yet another story about one of these pitiable hypochondriacs who

"believe that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers, who feel frustrated and angry that doctors remain sceptical that this is the actual cause of the illness."

Another rehash of the same noxious fantasy Prof Simon Wessely continues to peddle. If this spoke of other races, the elderly, homosexuals or other groups in modern society, there would perhaps be well-trodden paths to protest how we are being so unjustly mocked and libelled.

There is now a growing undercurrent of robust rebuttals of this sloppy journalism and outright vilification of vulnerable M.E. patients. So there must be. From everyone who has a voice or a pen. Or we will find history rewritten in an unfamiliar typeface, using a language of contempt and denial we do not recognise.

 

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

You learn something "new" every day

Today in the "Daily Mirror" (please watch me in case I write something true but libellous!), Dr Miriam Stoppard wrote an article entitled:

"Could new techniques ease living with ME?"

Here's a link to said article:

Miriam Stoppard's "advice" in "The Daily Mirror"

Dr Stoppard is well known for her previous statements that ME (lumped here under the CFS brolly with no apparent insight gained from the last few decades of medical research!) is bunk.

She graciously (yes, I'm doing irony!) deigns not to make the same sweeping statement again. Not because she has learned from the latest research, but rather, because she is still smarting from the "bitter experience" of upsetting people suffering with ME through insensitivity and ignorance last time she plunged into print about it.

Believe us, the "bitter experience" of living with ME, not to mention the "bitter experience" of having well-meaning souls snipping out similar nay-saying misleading articles and press cuttings like this to pass on to ME sufferers to "give us hope", bears no comparison to the temporary fit of pique caused by you having your highly paid opinion shown up as risible and dangerous, Dr S!

For your information, there is nothing "new" by any stretch of the imagination in the notion that CBT and GET can help (or cripplingly hinder) the progress and wellbeing of people with various forms of ME-related illnesses. Both forms of talking therapy/graded exercise have been with us for many years, beginning in those dark ages when ME was believed to be no more than a form of depression with added idleness thrown in for good measure (when we had the luxury to wallow in our so-called "lifestyle choice" AKA "Yuppie Flu").

In the mildest forms of post-viral fatigue, indeed, CBT (Cognitive Behavioral Therapy) and GET (Graded Exercise Therapy) will soon, inevitably, make everything hunky dory as the body gets over its temporary viral setback. But ME shows every sign of being something much more disabling and persistent for a percentage of sufferers.

For the rest of us, in fact, in clinical trials, it has been proven time and time again not to be helpful at all, but often quite the reverse. Those who were too sick to show improvement, or who were made worse by CBT and GET, have been systematically airbrushed from the medical world's horizon.

The NICE guidelines themselves have been challenged robustly for deliberately and cynically giving weight to the idea that the cheap and potentially ineffective CBT and GET are the only way to go. It saves on funding proper rigorous research, in any case. 


Dr Stoppard has read her NICE guidelines, at least. Haven't we all, doctors and ME patients alike? But the PACE trials (to which I assume she is referring in this article?) did not, as stated categorically in her article, prove that these generalised techniques and therapies were a newfound lifeline to the "walking well". Cos we ain't always walking, and we're very far from well!


The article, to be fair, does admit in the penultimate paragraph that CBT/GET should be used alongside other approaches such as:


"dividing the day into sessions of rest and work; setting realistic goals; healthy eating; trying to reduce stress and joining a support group".


These are all elements of "pacing" well known and vital to merely functioning day to day for many of us with ME.


I'll "try to reduce stress" right now, by putting the article to one side and having a lie down to recover from a few sessions of angry, muddled typing and several edits through the day!


Giving a whole new dimension to the concept of patronising, the article ends with the breezy:


"So people with CFS" [the much vaguer term used here instead of ME in the headline!] "may want to try CBT and graded exercise. It could change their lives".

We're so over breezy and patronising, Miriam. Thanks for asking.