Friday, 25 September 2015

Gluten for punishment

(I thought this might be of interest as many people with ME do seem to have a problem with gluten.)


It’s trendy to be gluten-intolerant—but science is discovering it’s much more than a fad, and it could have to do with the way the modern loaf is made.

Your grandmother was right—bread really doesn’t taste as good as it did in her day. Something happened to bread-making in the 1960s that made production faster and the standard loaf cheaper. That something, known in the UK as the ‘Chorleywood method’ after the town where it was devised, was the adding of emulsifiers, preservatives and, most significantly, enzymes to the mix.

And something started happening to our guts too. Coeliac disease, an autoimmune response to wheat, has escalated, and a new breed of problems—irritable bowel syndrome (IBS), and inflammatory bowel diseases (IBDs) such as Crohn’s and ulcerative colitis—started to emerge in the 1970s.

Around the same time, people also started to complain of being gluten-sensitive or gluten-intolerant—a problem that’s been given the umbrella definition of NCGS, or ‘non-coeliac gluten sensitivity’.

Doctors insist it’s impossible to test for gluten intolerance as, unlike coeliac disease, there are no inflammatory markers and there’s no damage done to the small intestine. Blood tests exist, but the results from these are, at best, variable.

Despite the absence of obvious biological signs, around 29 per cent of people reckon they can’t eat the modern loaf and claim they suffer from one or more of the symptoms, such as upset stomach, aching joints and light-headedness.

Celebrities like pop star Miley Cyrus (who helpfully Tweeted “Gluten is crapppp anyway!”), fashion icon Victoria Beckham, tennis champion Novak Djokovic and film star Gwyneth Paltrow have all proclaimed themselves gluten-intolerant. There are travel agents who plan gluten-free holidays, while wedding planners will put together a gluten-free reception. The gluten-free rage has even infected the cartoon series South Park, which in a recent episode featured the town as ‘the first gluten-free in the nation’.

The movement has been supported by two best-selling books, William Davis’s Wheat Belly (Rodale, 2011) and David Perlmutter’s Grain Brain (Little, Brown & Co, 2013). Davis, a cardiologist, blames gluten for everything from arthritis and asthma to multiple sclerosis (MS) and schizophrenia. Perlmutter, a neurologist, goes further. Gluten sensitivity, he says, “represents one of the greatest and most under-recognized health threats to humanity”.

All of this has fuelled the ire of the sceptics who dismiss the trend as faddism. One of the more entertaining voices is April Peveteaux, a coeliac who, in her book Gluten is My Bitch (Stewart, Tabori & Chang, 2015), says: “No matter what kind of sickness has taken hold of you, let’s blame gluten.” After all, they argue, gluten—an elastic protein found in wheat, rye, barley and some oats—has been around for centuries, so why should it be only in the past 30 years or so that we are suddenly reacting to it?

Is it the enzymes?

There’s a growing body of research that suggests they could be right—up to a point, that is. People are reacting to the modern loaf, but it may have nothing to do with gluten. Instead, it could be a reaction to the enzymes added during the baking process, especially alpha-amylase, which breaks down the starch in bread into sugars (called ‘hydrolysis’) that are more easily taken up by the body.  

Others posit that it’s really the complex carbohydrates—collectively known as FODMAPs (an acronym for ‘fermentable oligosaccharides, disaccharides, monosaccharides and polyols’)—that are to blame.

FODMAPs carbohydrates are osmotic, which means they pull water into the intestinal tract, which can cause abdominal pain, bloating and diarrhoea. They’re found in wheat and rye, but also in some fruits and vegetables.

It’s an idea that’s already having some success among IBS sufferers who, when put on a FODMAPs-free diet, see their symptoms improve. But then, the same improvements have been seen in people who are gluten-intolerant.

Peter Gibson, a professor of gastroenterology at Monash University in Australia, has been fascinated by the phenomenon for years. In one study involving 34 IBS sufferers, who all said their stomach problems improved or even disappeared when they stopped eating gluten, Gibson and his team put them on a strict gluten-free diet—but didn’t reveal that half of them were given muffins and bread that contained gluten. Neither the scientists nor the patients knew who was eating what, yet most of those given gluten complained that their stomach pains and bloating had returned. In one stroke, Gibson demonstrated that gluten intolerance isn’t ‘in the head’, as many sceptics still maintain.1

Buoyed by this success, Gibson turned his attention to FODMAPs. In a later study, he recruited 37 volunteers who said they were gluten-sensitive. They were put on a strict diet free of gluten and FODMAPs and, after two weeks, they all said their symptoms had improved. Gluten was then added back into the diet of some of the volunteers, yet their symptoms didn’t return, suggesting their gluten intolerance was nothing of the sort.2

A lot of it about

It’s hard to be sure what’s going on, but something most definitely is. The rate of coeliac disease has increased fourfold in the past 20 years, although it affects only around 1 per cent of the population, according to official figures. Dr Alessio Fasano, at the University of Maryland School of Medicine, puts it much higher at around 7 per cent, and the true figure is much higher still, as it’s recognized that just 24 per cent of cases are ever diagnosed.

Then there are the gluten-sensitives who complain of discomfort and stomach pains after eating gluten. Again, it’s hard to gauge the true extent of the problem, but it’s thought to be six times greater than for coeliac disease. Nearly 20 million Americans say they are gluten-sensitive, and a Mintel report in the UK estimated that 7 per cent of Britons complain that gluten triggers stomach problems, while a further 8 per cent avoid it as part of a ‘healthy lifestyle’.  But whatever is happening is down to modern processes for making the standard loaf—that much seems clear.

In 1907, master baker John Kirkland calculated that the yeast quantity in the final dough that went into making a loaf was just 0.1 per cent. By 1996, this had increased to 2.38 per cent, an increase of 23 times over that used in Kirkland’s sponge-and-dough bread.

Milling methods were also beginning to change when Kirkland was making his bread. Before the invention of the roller milling used today, all flour was produced by crushing the wheat between revolving stones. All parts of the wheat—the bran, germ and starchy endosperm—were included in the mix, a process that gave its name to wholemeal, or whole-wheat, flour. With the roller system, which was first used in 1870, the wheat passed between pairs of steel cylinders which stripped the layers off the grain—yet most of the vitamins and minerals are found in the outer bran layers of wheat. So even back in those days, the goodness of bread was being depleted.

We have our methods

But the radical change happened much later, in 1961, when the British Baking Industries Research Association met at its Chorleywood, Hertfordshire, headquarters to devise a faster and more cost-effective way of making the standard loaf. They came up with a method that used low-protein wheat, an assortment of additives and high-speed mixing.

Commercially the Chorleywood method was a marvel; bread with apparent volume and lightness could be produced at high volume, very quickly and at very low cost. With the preservatives, the bread had a much longer shelf life and could also be used for days afterwards in the kitchen.

It’s virtually tasteless, however, and most of us have experienced that sensation when the bread seems to stick to the roof of our mouths. But it’s our guts that we need to be worried about. Just four ingredients—flour, water, salt and yeast—are needed to make bread, and even yeast isn’t necessary if the baker is using sourdough. Yet the Chorleywood method includes 12 separate types of ingredients—many of which don’t need to be revealed on any packaging labels—which could be playing havoc with our health. 

The standard Chorleywood-method loaf includes:

• Flour
• Water
• Salt
• Yeast
• Fat
• Improving (flour-treatment) agents (L-ascorbic acid, or E300)
• Bleach (chlorine dioxide gas)
• Reducing agent (L-cysteine hydrochloride, or E920)
• Soya flour
• Emulsifiers (diacetyl tartaric acid esters, sodium stearoyl-2 lactylate, glycerol monostearates, lecithins)
• Preservatives (calcium propionate)
• Enzymes (alpha-amylase, maltogenic amylase, oxidase, protease, peptidase, lipase, phospholipase, hemicellulose, xylanase, transglutaminase).

Andrew Whitley, who co-founded the Real Bread Campaign, says the enzymes are “modern baking’s big secret”. They don’t have to be disclosed on product labels because they can be classified under the umbrella term ‘processing aids’, whereas all additives must be declared.

The enzymes are used to help the bread stay softer for longer; one of them, phospholipase, is derived from pig pancreas (something that many vegetarians are unaware of as they tuck into their cheese sandwiches), while alpha-amylase is a known allergen. Transglutaminase, used to make the dough stretchier, turns the wheat protein toxic to people with severe gluten intolerance.3

And there’s another ingredient that even the Chorleywood creators hadn’t envisaged: the weed killer glyphosate, designated a ‘probable carcinogen’ by the World Health Organization. The UK’s Soil Association has discovered that glyphosate is in one in every three slices of bread, put there by farmers who spray directly onto wheat before harvesting.

All about gluten

Gluten, an elastic protein and one of four contained in wheat (the other three are albumin, globulin and gliadin), is produced when water is added to flour. In the body, it’s broken down into chains of amino acids known as ‘peptides’, and it’s always been assumed that these chains pass through our digestive system—unless you’re a coeliac sufferer, in which case your immune system ‘sees’ them as invading microbes and so mounts an inflammatory response.

But new research has discovered that gluten peptides don’t travel harmlessly through the digestive system; instead, they survive the digestive process and pass through the gut walls and into the bloodstream, causing potential biological harm.

It’s something of a scientific first, as all previous studies have used pure gluten for their tests. But in this case, researchers at the University of Milan used actual bread and pasta bought from the local supermarket, and discovered that the digestion of gluten resulted in exorphins (molecular fragments of wheat proteins, or peptides)—which have been found in the spinal fluid of people with schizophrenia and autism, and are believed to worsen the symptoms of these neurological conditions. They are also found to have opioid-like effects on the brain, making us feel drowsy, one of the typical symptoms mentioned by people who are gluten-intolerant.4

Our inability to process gluten proteins safely could have something to do with the manufacturing process, another recent paper suggests. While pure gluten—used in all previous studies—seems to be digested properly, the wheat gluten protein in bread is “virtually undigested . . . probably because of gluten–starch complex formation during baking”.5

Science seems to be edging closer to the idea that there really is something to gluten intolerance. Instead of it being all in the head, it really could be just where the sufferers have always said it is—in the gut.

The history of coeliac disease

AD 2
Aretaeus of Cappadocia, a Greek physician, describes a form of diarrhoea in children caused by the malabsorption of certain foods

1888
Samuel Gee, an English paediatrician, suggests a cure through diet for children suffering from chronic indigestion

1924
Sidney Haas, an American paediatrician, identifies carbohydrates as the culprit in coeliac disease, and treats 10 children with a banana diet

1930s
William Dicke, a Dutch paediatrician, noted that children with coeliac disease improved when they stopped eating wheat

1950s
Margot Shiner, a pediatric gastroenterologist, develops a biopsy test for examining the small intestine in coeliacs

1964
The anti-gliadin antibody is discovered

1980s
Coeliac disease is linked to other autoimmune diseases, such as thyroid problems and diabetes, as well as Down’s syndrome

1990s
Coeliac disease’s genetic markers are identified, along with anti-glutaminase antibodies

Gluten-not-so-free

The gluten-free market is big business. It’s now the most trendy food offering around, and it’s estimated that 100 million Americans—nearly a third of the entire population—will be eating some gluten-free product this year. 

The gluten-free market is generating around $9 billion in sales per year in the US alone, and it’s projected to rise to $14.2 billion a year by 2017. This will be double the sales revenue achieved in 2012.

The rise is fuelled by around 40 per cent of the adult population who think that a gluten-free diet benefits everyone, unlike the 44 per cent who dismiss it as a fad.

It’s big business outside the US too. In Finland, 15 gluten-free snack bars were launched in 2012, but this had risen to 74 a year by 2014. Similar patterns have been seen across the UK, Germany and France.

Wheat and gluten: what’s the difference?

Wheat-free and gluten-free are terms that are used interchangeably—but there is a difference. Gluten is one of four proteins found in wheat, but many people who are allergic to wheat are reacting to one of the other proteins, most likely albumin and globulin.

Gluten is also found in rye, barley and oats, although in smaller quantities than in wheat, so a gluten-free diet probably excludes those grains as well. A gluten-free product will always be wheat-free, whereas a wheat-free item isn’t always gluten-free. And if you are gluten-intolerant, you should be avoiding pizza, pasta, bread, cereals, cakes, and flour and alcohol made from the grains listed above.

IBS: gluten intolerance by another name?

The vast majority of patients with irritable bowel syndrome (IBS) are also sensitive to gluten. But is there a difference between the two conditions? Researchers who tested 148 IBS patients are beginning to doubt it. They split the group into two, and gave half a proper gluten-free powder and the rest a placebo, or dummy mix. The results were overwhelming: those on the gluten-free diet saw their symptoms improve dramatically.

So using the IBS label instead of gluten-sensitive could be misleading, and could even delay proper treatment.1

The same could be said of coeliac disease, inflammatory bowel disease (IBD) and gluten sensitivity: they all share similar symptoms and are resolved by the elimination of gluten from the diet, another study concluded.2

REFERENCES

1 Am J Gastroenterol, 2011; 106: 508–14
2 Gastroenterology, 2013; 145: 320–8.e3
3 Trends Food Sci Technol, 2005; 16: 510–2
4 Food Res Int, 2015; 72: 208–14
5 Mol Nutr Food Res, 2015; doi: 10.1002/mnfr.201500262



Thursday, 24 September 2015

Why Would Anyone Get A Flu Vaccine?


(Note from Dr Brownstein:  I was interviewed for this article which was posted to Newsmax.com.)

It’s fall, and health officials are beginning their yearly push to convince Americans to get the latest version of the flu shot.

Last year’s vaccine was a tremendous dud — a new strain of H3N2 influenza emerged after the vaccine was formulated, and the shot was a poor match. Even the Centers for Disease Control and Prevention (CDC) admitted it did little to protect against flu.

This year’s vaccine has been designed to protect against the new H3N2 strain, and the CDC hopes it will be a good match for this year’s virus, although the agency admitted in a recent advisory that it’s impossible to predict the upcoming flu season.

Should you get the new vaccine? The CDC says “yes,” and CDC Director Tom Frieden, M.D., got his yearly shot during a news conference meant to convince others to follow suit.

Not so fast, says holistic family physician David Brownstein, M.D. “In the past, the flu vaccine hasn’t worked for most of us, and there’s no indication that it will this year,” he tells Newsmax Health.

“The flu vaccine has been around for over 30 years, and there is not one single study showing that any flu vaccine has helped prevent the flu in the majority who receive it,” says Dr. Brownstein, author of the newsletter Dr. Brownstein’s Natural Way to Health.

“Nor has it been shown to prevent flu complications, such as pneumonia, hospitalizations and death, in well over 90 percent who receive it. As usual, they are taking their best guess as to which strain of flu will be predominant, but they have no way of being sure,” he says.

Even when the flu vaccine matches the circulating strains of influenza, the shot performs poorly, and does not offer 100 percent protection, Dr. Brownstein argues.

“Whether they are right or wrong, the cases of flu are about the same whether the vaccine is a good match or not because flu shots don’t work,” he says. “A review of 50 studies that included more than 70,000 adults found that 100 people needed to be vaccinated to avoid one case of flu. That means the vaccine failed 99 percent who took it — they received no benefit at preventing the flu.”

Although seniors are especially urged to get the flu shot, some experts say they don’t protect older people, and the government knows it.

Investigative reporter Sharyl Attkisson says the government has ignored numerous studies showing the vaccine was ineffective in the elderly, and a 10-year-old study was ignored because the results weren’t what were expected.

“It found that after decades and billions of dollars spent promoting flu shots for the elderly, the mass vaccination program did not result in saving lives,” Attkisson wrote. “In fact, the death rate among the elderly increased substantially.”

Dr. Brownstein agrees.

“There are no good studies showing that the flu vaccine is effective for seniors,” he says. “When you take apart and break down a recent study that the government uses to promote the flu vaccine to senior citizens, you’ll find that 217 elderly people had to take the high-dose flu vaccine to prevent a single case of flu — that’s a 99 percent failure.

“In addition, every single person was exposed to possible adverse effects. It’s vital to always bear in mind that the flu vaccine can cause side effects, including Guillain-BarrĂ© Syndrome (GBS), and has been linked with narcolepsy in children and an increased risk of Alzheimer’s.”

He also points to a study published in the International Journal of Obesity which found that flu shots aren’t effective in obese people.

Johns Hopkins scientist Peter Doshi, says that although the vaccines are being pushed on the public in record numbers, they are less effective and cause more side effects than admitted by the CDC.

Dr. Brownstein also notes some formulation of the flu shot contain trace elements of mercury and formaldehyde. Although CDC and other health authorities say these preservatives are at levels so low they pose no harm, Dr. Brownstein disagrees.

“There is simply no justification for injecting any living being with mercury or formaldehyde, especially pregnant women,” he says. “I guess I could encourage people to get vaccinated if the flu vaccine actually worked and did not contain toxic additives, such as mercury and formaldehyde. But it doesn’t work, and it does contains toxins, so I advise people to avoid it. 

“There’s no real reason to believe that this year’s vaccine is going to be any better than in the past.”

© 2015 NewsmaxHealth. All rights reserved

Thursday, 10 September 2015

O How The Grace Of God Amazes Me

It is a while since I last posted a favourite hymn, so it’s time for that to change.

O How The Grace Of God Amazes Me

O how the grace of God
Amazes me!
It loosed me from my bonds
And set me free!
What made it happen so?
His own will, this much I know,
Set me, as now I show,
At liberty.

My God has chosen me,
Though one of nought,
To sit beside my King
In heaven’s court.
Hear what my Lord has done
O, the love that made Him run
To meet His erring son!
This has God wrought.

Not for my righteousness,
For I have none,
But for His mercy’s sake,
Jesus, God’s Son,
Suffered on Calvary’s tree—
Crucified with thieves was He—
Great was His grace to me,
His wayward one.

And when I think of how,
At Calvary,
He bore sin’s penalty
Instead of me,
Amazed, I wonder why
He, the sinless One, should die
For one so vile as I;
My Saviour He!

Now all my heart’s desire
Is to abide
In Him, my Saviour dear,
In Him to hide.
My shield and buckler He,
Covering and protecting me;
From Satan’s darts I’ll be
Safe at His side.

Lord Jesus, hear my prayer,
Your grace impart;
When evil thoughts arise
Through Satan’s art,
O, drive them all away
And do You, from day to day,
Keep me beneath Your sway,
King of my heart.

Come now, the whole of me,
Eyes, ears, and voice.
Join me, creation all,
With joyful noise:
Praise Him Who broke the chain
Holding me in sin’s domain
And set me free again!
Sing and rejoice!

Emmanuel T Sibomana (1915-1975)


Saturday, 5 September 2015

New research gives insight into chronic fatigue syndrome

(Although this article from Australia unfortunately uses the term “chronic fatigue syndrome”, it also states that the name Myalgic Encephalomyelitis “is far more accurate”, which is nice to see.)


Researchers have discovered that critical cell receptors are damaged in people who suffer from chronic fatigue, reports Daniel Horsley.

Carly Tomlinson spent more than 18 months lying in bed after being diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS), in 2012.

“It makes you feel as though you have the flu every single day – sore throat, headaches, fevers, aching body, inability to think, sensitivity to light and noise – all that jazz,” the 24-year-old East Bentleigh woman said.

While she is now back and working at a tea shop 10 hours a week, Ms Tomlinson still takes between 14 and 22 tablets daily. She needs two tablets of one of these medications, imported from Germany, every four hours to prevent her from fainting.

“[Chronic fatigue] weakened my body more than I ever saw coming,” she said.

Ms Tomlinson also developed four separate heart conditions, was unable to digest dairy and gluten and needed to start wearing glasses.

ME affects between 100,000 to 250,000 people in Australia, leaving around 25 per cent of them bed-bound. Experts say it is a nightmare to diagnose because it has a range of about 50 different symptoms, of which 20 occur in about 70 per cent of patients.

It is a disorder that has no cure and its cause is still largely unknown. It triggers a range of conditions including long-term fatigue, and muscle and joint pain as well as damage to the cardiovascular and digestive systems.

But now researchers may have found a key to explain why chronic fatigue syndrome can wreak such havoc on the body.

Scientists at Queensland’s Griffith University have discovered that critical cell receptors that help regulate human cells can be damaged by an infection or severe physical or psychological trauma.

There are many different kinds of receptors found throughout cells that help them function normally. It is common for receptors to make harmless, tiny changes to the cell, known as polymorphisms.

But in people with ME the damage is done to the so-called “threat receptors” which, like white blood cells, deal with potential attacks to the body.

While the researchers are yet to discover if this damage to the cell receptors causes either a loss or an increase in function, they do know that because these receptors are connected throughout the body any malfunction can cause extensive damage.

Professor Don Staines, the co-director of Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, said the next step is to find out “why this happens to some people and not others”.

Dr Staines, who is the head of a ME research team, said the term “chronic fatigue” is hated throughout the medical profession.

Although it’s known as chronic fatigue syndrome, he said fatigue is an unfortunate word because it trivialises the severity of the condition. He said the word fatigue is better applied to the slow recovery time.

Dr Staines said the formal name of the illness, myalgic encephalomyelitis is far more accurate because in medical terms it relates specifically to brain and spinal cord inflammation with associated muscle pain.

But as frustrating as Dr Staines finds chronic fatigue to be as a medical term, Ms Tomlinson is weary dealing daily with people’s assumptions about her condition.

“If one more person says to me ‘Oh, so I guess you’re just really tired then, that’s all?’, I really might crack it.”



Tuesday, 1 September 2015

Consider The Evidence

By Jane Colby, Executive Director of the TYMES Trust


Consider the evidence. You've had what you thought was flu. Or something like glandular fever. Or, you've had a stomach upset, a gastroenteritis. Or, you've had a bad throat, a cough. Maybe you've had a combination of these, or just some weird bug, perhaps something you hardly noticed, or believed was a cold.

You expected to throw it off and get on with your life. As we normally do with these things. And maybe, to start with, you do. But in a short while, something else happens. Something quite other than what you expected. And this you don't throw off.

This mirrors the pattern of poliomyelitis; an initial infection, an apparent improvement, followed by the complications. Your bug was quite the chameleon, a shape-shifter par excellence. It could have mimicked flu if it chose, or glandular fever, it could have given you a bad throat, a funny tummy, aches and pains, sneezes. It is versatile and has many different presentations. So some people are told they've had flu, some are told they've had glandular fever, some are told they've had tonsillitis - you get the picture.

What follows is clearly none of these. It's another stage, a terrible development from the original infection. Your immune system didn't kill it off, it is still engaged in the battle, and is likely to be for a long time.

Weeks and months later, you still feel dreadful, worse than you've ever felt with other illnesses. You don't recognise these feelings. Something's different about them, truly different. Your mind tries to alert you to the presence of injury, but you can't take it in. No more can anyone else. You're not just unable to exert yourself, you're in pain, your muscles won't work properly, they twitch and hurt, you fall downstairs when your brain forgets how to put one foot in front of the other, your skin burns and prickles, it can't bear to be touched, yet half your face has gone numb. You ring the doctor in a panic. Is it a stroke? You can't speak your own language correctly, or make sense of what others are saying. You know what the words mean, but they don't hang together. And it all takes so long to process. It's as if your internal Broadband went down. You feel unsafe; for the first time in your life, you can't trust your body.

Recognise any of this?

One day you struggle to a local shop and find you can't count the money in your purse. Your fingers buckle when you get home and try to cut bread. From now on, you buy sliced bread, only to find you can no longer grip the can opener to prepare what you thought was an easy lunch of soup and toast. With an Olympic effort, you get at the soup and sit on a stool as it warms. You eat your lunch, which tastes rubbish, and leave the washing up for a rest. But you get sick of staring at days' worth of crumbs on the carpet. So you get out the hoover, like Hercules. That's more like it. You're normal after all. Relieved, pleased, proud, you heave it back into the cupboard and collapse on the sofa. You're clearly on the mend. It'll be fine.

It's not fine.

Soon, you're in serious pain. Your muscles feel sore, inflamed inside. Suddenly, your heart starts racing, it's tripped into a different mode and doesn't switch back again for ages. What a relief when it does. But that's not normal, surely? And you're ill. So ill. You couldn't say quite how you know that. Your body is telling you many new things, things it's never had to say to you before, and you're still not used to these messages. But now you begin to take heed. Somehow you get to bed; you'll see the doctor in the morning. Next day you wake not knowing quite who you are or what the day is. You can't stand up.

This is not funny.

It's not material for a comedian's jibe, nor a presenter's cheery: 'We must sort that one out!' before moving on to the next feature. Oh yes, that's been said. With no conception of the public health threat we are facing, and that they are not announcing.

It's certainly not amenable to exhortations to 'pull yourself together'. Or to confident assertions from physiotherapists that riding a bike, or playing tennis, will cure you in three weeks. Oh yes, that's been said too. This is uncharted territory for you, perhaps also for your GP, your relations, your neighbours, your boss, who's naturally asking when you'll be back. You don't know when you'll be back. You just want to be better and you don't care how. You start on the endless quest for a quick fix, you start believing it when you're told it's depression, or that you need psychological therapy; you pore over all those clippings given you by well-meaning friends, stories of someone who's found a magic 'cure' (and who, by co-incidence, is now selling it at eyewatering rates) and you wonder, like the ancients thousands of years ago: 'What did I do to deserve this?'

In the end you get a diagnosis. Chronic Fatigue Syndrome. Chronic what? That can't be right. Fatigue? I know what fatigue is. It's when you wear yourself out, you sit with a cup of tea and in half an hour you're ready to go. Or it's when you've worked long hours, you have a bath before bed and wake ready for a new day. That's 'fatigue'. This is not fatigue. Whatever it is, it's unfamiliar, alien. And, at last, you start trusting yourself. You start believing in your own judgement.

And all this time your body has been pleading: 'Let me alone please, just feed me, love me, let me rest, try to find pleasure in something simple - the flowers and the trees and the rain - endure the pain, ask the doc to check out the ache in your chest, but don't bother me with trivia like how you're going to afford months off work. I've got a life-saving job to do here. It's going to take me some time. Read a book. Several books. Well, OK, read the whole library, even if you can't hold the book or focus for long, and keep forgetting the plot. I understand. I really do. Get yourself a new life, a different one. It'll be restricted but if you just let me work on it, I'll give it my best shot. You don't have a choice really, do you?'

'Oh, you do. You're going to let them put you through their latest exercise programme. (Sigh.) Well, my advice would be, wait till I'm much better. Hopefully I will be, if you don't let anyone meddle and make me worse. Deal?'

Sadly, how you're going to afford months off work isn't trivia. It may not be your body's priority, but it's yours. Where are your living expenses to come from? You cringe at the idea of benefits, you feel ashamed to need them. Worse, proving your need is the stuff of nightmares.

And if you're a child? The law says you have to work. They don't call it work, they call it 'school', but it's the same thing. Going to work. Some adults can negotiate working from home. Try doing that as a child. You don't fit the mould. 'You're anxious,' they say ('If you had my disease, you'd be anxious!') or, 'she's got social phobia' ('But I miss my friends!') or your mum's neglecting you, or maybe doing something to make you ill ('She's what? She's the only person I can trust.') Then they get really suspicious: 'Her mother's aggressive.' Let's think about that. Would you approach a calf when it's mother's around? Parents are supposed to defend their young from a threat. That's what mums and dads are for. School is no place for a seriously ill child.

But the system doesn't recognise what's wrong with you.

Now surely, I'm being unfair, aren't I? Surely, most professionals are kind and caring and sensible. And - well - professional. Indeed, many are. If you're one of these people, know that you are like gold dust. You will never be forgotten throughout that child's life. I was head of a school for nine years, I still work with teachers, and have just signed Mr Paul Willsher's Tymes Trust Young Hearts Award certificate for which he was nominated by his pupil, Amy. But equally, I am ashamed at the things that are said to children with ME by other members of my own profession: 'I don't care how much pain you're in, you're not going home till lunch time.' 'You've trained your brain to be ill.' And from a seven year-old's school plan: 'When child does not wake in the mornings, mum is to carry child into school in her pyjamas and teachers will dress her when she wakes and take her to class.'

In the words of a nurse in training who got dragged into the child protection nightmare: 'We are just shellshocked by it all. I read the 1997 Panorama programme transcript and felt physically sick. We don't know what to do and we're scared of all this.' She continues: 'I am absolutely bewildered as to why this has happened. I have to wonder how an illness can cause all of this and why the person affected and their families aren't listened to.'

That's my point. That is what this scandal has led us to. History has to put it right. And the patient's voice is where we get many of our answers. The patient is telling the doctor what is wrong. And the doctor must listen.

Did you notice?

Did you notice my sleight of hand? I named this episode 'Consider the evidence'. Of course, I was referring to concrete evidence, your evidence, your own personal, grounded, real-life lived experience.

There are those who would have you believe that this doesn't count - well, not for much. That's because evidence-based medicine (the buzz-phrase being sagely reiterated like the management-speak satirised in The Office) is all about randomised controlled trials (RCTs), the 'gold standard'. Perhaps, in theory, it is more reliable than a collection of uncontrolled anecdotes from individual patients. In practice, it's not necessarily reliable at all. Not according to the former head of the Medical Research Council. Why? Too many pitfalls. Too many ways in which the criteria used for the studies, the processes involved in analysis of results (not to mention the slant - one might almost say 'spin' - applied at the writing up stage) can be subtly shifted till a pattern emerges that is satisfying to the researcher. It's natural. Scientists frequently have a hypothesis; often the data appears to prove it. But we tend to see what we want to see. Researchers are just as capable of error, bias and downright stupidity as other mere mortals. They are human.

There was a time when doctors were placed on pedestals and it did them no good at all; they found it hard to confess when they weren't all-knowledgeable, in case they slipped off. Now the pedestal has been moved. Now it's researchers sitting up there. But they no more deserve worship than any other profession. Wise scientists, like wise doctors, wise teachers, wise parents, wise human beings, recognise that it is in no-one's interests to ignore reality. 'Once upon a time,' posterity will say, 'there was a school of thought which held that people whose ME got worse when they exercised, got better by being exercised.' What?

The tragedy is that sincere people, doctors and therapists who want to do all they can to help, get sucked into the black hole of belief, even when the evidence is before their eyes, even when parents are telling them: 'Doctor, it doesn't work.'

When you know how these viruses multiply after exercise, it is chilling. I'll deal with that in a future episode.

Let's come at this from another angle. I was very moved back when World War I veteran Harry Patch, in his last years, announced to the media that war was legalised murder, and that leaders who wanted to go to war should be given a gun and told to go fight each other. This man didn't need a randomised controlled trial of weapons to know the horrific things they do to a human body. He had seen it at first hand. He had the authority of personal experience from which to judge, and from which to speak and be heard. I didn't notice him being derided. He may not have been able to eradicate war - that surely is the holy grail - but he wasn't ignored, he was listened to, given a media platform, and his evidence wasn't relegated to some sort of basement dump.

People with ME have the equivalent authority, yet when they clearly describe their illness and recount their personal experience of what it has done to them, how they have seen exertion worsen their condition, how their bodies just do not function, too often they find their real-life evidence relegated to the lowest category of reliability. The basement dump. This has to change.