Rick Newlands 2013 - 2017

What is M.E.?

Pilots and Astronauts will be familiar with the effects of the lack of oxygen in the air at very high altitudes. The symptoms of

this hypoxia or ‘altitude sickness’ are well known, and are identical to a lot of M.E. symptoms: no energy, can’t generate body warmth, can’t concentrate, poor memory, mood changes, and emotional frailty.

This is no coincidence: my immune system has decided, rightly or wrongly, that I’m under attack from a nasty virus, and so has immobilized me in order to divert all my energy into fighting a massive counter-offensive. When you have a bad ‘flu, it’s your immune system that makes you so weak and wobbly that you have to stay in bed.

American studies also show that M.E. patients have considerably less blood inside them, they’ve literally pissed it away. As well as making them cold all the time, it means that their energy levels dip much more between meals: if you have M.E. then don’t miss a meal, and consider four or five smaller meals a day rather than three big ones further apart. And for god’s sake don’t donate blood or you’ll fall over! A simple saline drip-feed can rebuild blood volume, and so can drinking plenty of water: see below.

To add to the fun, the immune system tells the heart and circulatory system that the body has to remain flat in bed to conserve energy. Again, we’re not sure how it does it, but this ‘orthostatic intolerance’ (OI) is common to most M.E. patients (97%) and I’ve got it: if they sit up too long, they get wobbly, the room starts to spin, and they fall over, often with a lot of pain to hammer home the point. I can’t sit up for more than a few minutes. Physicians who specialize in treating OI agree that the single most important treatment is drinking more than two liters (eight cups) of fluids each day.

Then of course, on top of all of the above are the pain and also the flu-like symptoms. You just feel like crap all the time which leads to depression. Imagine your worst bout of ‘flu, then imagine it continuing for months or years on end!

Never heard of M.E.?

I want to scream for help from the rooftops but nobody's listening. This website is the only way I can get your attention: M.E. just never gets any air-time, there’s almost a conspiracy of silence. I’m not being paranoid here: in the USA where there’s no National Health Service (shame on them), the wooly diagnosis ‘chronic fatigue syndrome’ is used instead of M.E. which ensures that there’s no chance of M.E. sufferers getting disability payouts as there’s no medical test for such a wooly definition. The USA medical insurance industry is a huge, greedy, monster and it wants M.E. swept under the carpet.

In order to get the word out a bit more, I’ve written a book about M.E., See the foot of the ‘About me’ page.

There are over 250,000 sufferers of M.E. in the UK with about 25% classified as being severely affected, i.e. bed- or house-bound. Each sufferer is a member of a family society that provides care and support, so for every sufferer there could be 2 or 3 other individuals affected by M.E.

250,000 sufferers is a very conservative estimate; it has to be much more simply because everyone knows someone who's got it, and there are 63 million people in the UK. The UK medical profession has a mechanism that would allow a poll of GP’s to find out the real number, but has deliberately chosen not to do so. If the real number got out, they’d be forced to have to do something!

Is M.E. caused by a virus?

The jury’s still out on this one. Oddly enough there is no known test that can answer the simple question ‘do I have a virus in me?’ It appears that you have to know what virus you might have before you can look for it: each test only detects one type of virus, and there are a lot of viruses out there, most of which still haven’t been discovered.

Oh, there is the old stalwart beloved by doctors whereby the lab pours your blood down a fine capillary glass tube, and if it flows fast enough, they tell you that you don’t have a virus. Actually what they say is: “so you’re fine, go away.” just as doctors and nurses will tell you you’re perfectly well provided your blood-pressure is correct even if your head has fallen off and is rolling down the bed.

Is M.E. caused by the immune system?

This is looking more and more likely. Inside your brain and spinal chord are cells called microglia. They’re part of the immune system and are triggered by hormones and cytokines (sorta hormones) so as to home-in on infection and sort it out. It appears that the microglia of M.E. sufferers have been altered in some way and are ‘trigger happy’, they fire-off when not needed which leads to inflammation of the lower regions of the brain. These lower regions control the production of the hormones that regulate your body’s functions, so if those hormones are not being produced properly, it leads to all sorts of problems.

The microglia also act to control ‘sickness behaviour’ which is the facile name for the brain’s method of making you feel sick as a dog and weak as a kitten in order to force you to stay in bed so that energy can be diverted to the energy-intensive immune system to fight disease.

Are there any treatments?

Sadly, not yet. Here in the UK the medical profession is simply ignoring M.E. presumably in the hope that it might just go away and stop embarrassing them.

Promisingly, it’s been discovered that the drug Rituximab, which blocks part of the immune system, can alleviate a lot of M.E. symptoms, but it’s early days yet. A few Rituximab trials have been carried out, but more are needed.

If nobody else claims an illness, then the psychiatrists jump on it and claim it as their own, which is what has happened here in Britain: Wessely and his merry men, and Chalder. They’ve got far too much influence on UK medical policy, and when God made their arses, he wasted a great set of teeth...

Let’s be honest, historically, the shrink’s track record on describing illnesses as purely psychiatric isn’t great. They used to call multiple sclerosis ‘hysterical paralysis’ and claimed that asthma was all in the mind. They’re tenacious: they won’t let go of an illness until it’s forcibly removed from them by another branch of the medical profession. Sure, most M.E. sufferers are depressed, but ‘duh’ it’s cos their lives have been wrecked!

The UK National Institute for Clinical Excellence (NICE), who’s word is god with doctors, hail psychiatric Cognitive Behavioral Therapy (CBT) as the most cost-effective treatment for M.E, it’s flavour of the month just now. Note to GP’s: read the small print. ‘Cost effective’ doesn’t mean best, or even effective, it just means ‘cheapest’.

In a nationwide poll, the charity Action for M.E. found that CBT only worked for 50% of those polled, and it actively harmed 30%. This is not surprising, as CBT will only work (a bit) once a critical milestone in a patient’s recovery has been passed, and not for the stated reasons: the basic tenet of CBT that you should ignore what your body is telling you and soldier on is dangerously flawed. CBT is only helping those poor souls who’ve become terrified of relapses cos they hurt so much and set your recovery back months, so they’re scared to death of doing anything at all. That’s shell-shock; repeated exposure to something very nasty that you have no control over: ask a soldier. It ought to be treated as such.

If people with M.E. are fit enough to go into Space, then surely they’re fit enough to work?

The only thing this mission proves is that in weightlesness (zero gravity), the able-bodied and M.E. sufferers are physically equal, but we knew that. Back on Earth however, the situation’s quite different because of gravity. I can’t sit up for more than 30 minutes per day, and I find travel very difficult: transport is designed for those who can sit upright. You try working like that. It took me months to compile this website cos I can only concentrate for a hour or so each day.

On a scale of 1 to 10 (10 worst) my M.E. is about a 6 or a 7, but those poor souls who are a 10 would find this Space mission quite lethal. The noise and vibration and concentration required could literally kill them. Their autonomic nervous system simply can’t take any stimulation whatsoever.

Spare a kind thought for the 10’s, they live in a perpetual limbo of pain and darkness. They can’t eat except by a tube in their stomach. They can’t tolerate light or sound, they’re in a sensory-deprived hell. Life holds no fun for them at all, and yet they’re determined to stay alive.