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The Devil's Laboratory.

Let us just say that The Devil is the sum total of human evil.  He is the is empty promise of food, the false hope, the rampant consumption and the bottomless pride of man.

Of course The Devil is anti-life, anti-diversity and generally a bit of a bad egg.  And so it was that he hatched a perfect scheme in which to entrap man:

A new disease.

The Devil had long known that, working together, good men were his match.  And so, with bitter resentment, he created for them an illness.  And it was a real stinker

A disease that simultaneously disabled, tortured and discredited its sufferers.  A disease of terrible suffering on the inside, that on the outside looked like mere laziness.

You can imagine how long The Devil laughed when he thought of it!

But then, just as Father Christmas baulks when he sees a request for money ("Ho Ho - OH?") so the smile withered on The Devil's face.  Men were his equal, and no matter what disease he could construct, they could produce its antithesis, its mirror in time, its treatment, its cure.

The Devil's delight would always be short-lived.

The trouble is, of course, that this ongoing conflict or contest, between good and evil shares a property common to all such instances of one-upmanship: escalation.

The idea of winning, conclusively, drives people toward endless warfare.

And so The Devil came up with a new plan.  The disease, M.E, was perfect: A black hole attached to every suffer, a silent partner, sucking the life out of them forever.  The genius, (and credit where credit is due, it was genius), was to go ahead and produce the cure for the condition himself.

Now. Why would the fictional "The Devil" in our story do something so good?

The Devil doesn't have time nor the inclination to answer you.  Like blood and engine oil he seeped through the cracks of the world, targetting, whispering, infecting.

M.E was loose.

When enough people had been crushed under the weight of this monster of a disease he returned to his laboratory to complete the final part of his (necessarily) diabolical plan.  To the sounds of suffering, piped in via intercom, The Devil completed his work.

The Devil took the cure for M.E, and it was the cure, the genuine cure (it was so good he had to wear oven-mitts to hold it), and he broke it in two.

He broke the cure in two.

Then, like a giant carrion crow he flew back into the world, unmasked, for all to see.  And he looked for hearts that were, through ignorance or envy, open to him.  There were so many.  There were so many.

He found doctors, already, laughing at their patients and calling them liars, because they hadn't yet seen through even the first level of The Devil's concoction.  And, at the same time, (for being in two places at once is a lot less difficult than you'd imagine), he found patients.  And these patient's hearts were charred black with hate.

And The Devil handed to each a broken, useless, half of the cure for his terrible disease and whispered to them ("This is the real cure for M.E!").

And then, with wisdom and cowardice and dishonour he left them to fight, tirelessly, forever.  Doctor vs Patient.  Exercise vs Rest.  Friend vs Friend.  Goodness vs Goodness.

Yeah, he left a few minions to keep the engine of fruitless endeavour idling, to sell tickets to the Titanic, and to recruit more bodies for the endless war.  But, in truth, the die was cast.

M.E is a disease that requires the utmost cooperation from doctors and patients to beat.

Yet, in the purest sense, M.E is conflict.

Patients know that they must rest.  They see no other option.  They've tried to do as their doctor asked but it only made them more ill.

Doctors know that their patients must exercise.  They see no other option.  If prescribed bed-rest to chronically ill people they would be harming them.

The polarisation becomes intense.  Doctors begin to see their patients as delusional, "Who else would fight so hard for their right to lie in bed and rot?".  And patients being to see their physicians as "Evil Nazi's, torturing them for pleasure."

And in the miserable melee, doctors are hurt, patients are hurt, and The Devil laughs his ass off.

The Devil laughs because he knows that the doctors don't have a cure for M.E, behavioural or otherwise.  And he laughs because he knows that the patients have no hope of a cure while they are viciously attacking the very people who are trying to help them.

He sees it on a widescreen like a football match.  Activists grabbing the ball, passing it to each other and making a shot for goal - but it's wide of the mark.  It's always wide of the mark!!  Then the doctors regroup, make a surprising come back and from nothing an attack develops... the midfield is scattered, the activists' defence is all over the place - an open goal - but, OVER THE BAR.  Always, over the bar.  It's like the goal repels the ball like similar ends of a magnet.

And there are those on the touch line:  They are wise enough not to play the game, or foolish enough to try to referee and police it ("People with M.E shouldn't be abusive to doctors or to patients").  And there is a crowd, shouting and baying and getting all worked up ...at nothing.

The Devil laughs his ass off! This is the entertainment of kings and lords and caesars!

And. 

And there is YOU reader, for you are here too.  

And from the touchline you slowly look from left to right.  You see the impossibility and futility of scoring any points.  You see the doctors and patients goals as gaols. You see the white flag of surrender in your hand and it disgusts you.  You cast it down and you enter the field.  But you pay no heed to the game, the melee, the writhing, heaving, trash heap of confused and suffering souls and you march straight across the pitch at right angles to the game.

You pick up speed.  You are not a liar.  You are not a fool.  You can see across the park a new goal, it shimmers, almost hidden from sight.  There's a ball at your feet.  And you are unchallenged.

And the beetroot red drains from The Devil's face and he drops his cigar into his lap.

The only prize, the only loss here, is time.

Time is what you are fighting for.

You have to win time.

Birch.

Coming soon.

Hope to publish lots of new M.E articles in the next few weeks.

  • When is a condition self-perpetuating?
  • Silent, rapid, malaise after inactivity.
  • Navigating "The Narrow Way".
  • Symptom variation over a 24 hour period.
  • Snakes and Ladders. (Video)
  • What's the damage? (Video)
  • A healthy activity cycle.
  • Over and under-spending and the energy budget.
  • The worst case scenario in M.E.
  • How bias blinds patients and physicians.
  • Objective measurement of illness and recovery.

And, of course...

 "Getting back on my skateboard after breaking both my arms!!". :)

 

Nectar.


The Four Friends.

Dr Dream worries that you will lose your whole life and health though over-caution. He steps in to save it. His domain is one of ideas, dreams and plans. He gently questions you and, when appropriate, he poses the expert suggestion: "Maybe you could do more?". When you are ready he refers you on to his collegue.

Dr Do! is a man of action. Life is to be lived. There is work to be done. You must stand on your own two feet. And, as you attack life, he smiles as you become fitter and stronger and more independent. Dr Do tells you to increase your activity, to push forward, to break through. There is no end to what you can achieve!

Dr Dulcify has a very different job. She steps in when she believes you are pushing too hard and over-exerting yourself. Just like Dr Dream she uses cognitive challenge in an attempt to change your behaviour. She wants you to accept the reality of M.E. As Dr Dream challenges your illness belief, so Dr Dulcify challenges your illness disbelief.  When you are ready she refers you on to her friend, Dr Dont.

Dr Dont! favours rest and sympathy. He listens to and accepts the reality of your experience and illness. He gathers the support of your family, friends and society.  He tries to make you comfortable.  He tries to give you time and a place to rest and to heal.

Each one of these doctors can help an M.E patient so much at the right time.  Each one is a vital part of a cycle that helps a person with M.E determine whether to push forward or to pull back. 

They don't all get on together, but they should, for each one of these doctors is trying to save your life. 

Hello to you.

 


Milly, @MEAwarenessHour

Can someone let me know if Milly, (@MEAwarenessHour on Twitter) is okay?

It now seems clear that something is wrong: Friends can't get in contact with Milly and it's been weeks since she hosted her weekly #MEAwarenesshour.

Milly has worked so hard for people with M.E and greatly supported my mental health these last years.

I hope so much she's okay.

Riverbank

 


The Story So Far...

 

 
 
Hello. I'm not a doctor.  I was will with M.E (PVS, CFS) from age 11 until age 46.  I set up a website in the 1990s and responded to thousands of very ill people.
 
 

 
M.E is a terrible trap, a bind, a tar pit.  A life with M.E is so limited, yet so exhausting.  A life with M.E can be so painful and yet so empty.  A life with M.E is isolating and hard to bear.  M.E patients need help from family, from medicine and from society.
 

 
However, I learned something incredibly important while I was ill, something that I wish I'd known during the darkest, most hopeless, times.
 
 

 
In total I was ill for 35 years.  Both my decline and recovery from M.E were very slow.  There was one very special day however: It was the day late in my recovery when I walked the 12.5 miles from my home in East London to St Paul's Cathedral.  This was the day I beat M.E.
 
 

 
I think both rest and exercise can harm an M.E patient and both rest and exercise can help them. Have a look at my article "Lions and Tigers" for an introduction to this idea.
 
 

 
 
The tragedy of M.E research is that doctors were coming down to meet patients in dire need... ...and M.E patients were working to build a way out of M.E... ...but their differing perspectives on rest and exercise set them against each other when it mattered most.
 
 
 
 
Over time I found evidence of personal attacks and threats sent by M.E activists to researchers and to other patients.  Even as a well-known and widely trusted M.E patient advocate I could not get M.E charities, community leaders, and academics to address this critical issue.  I concluded that M.E advocacy and research work is unsafe.
 
 
 
 
M.E patients walk a tightrope between over and under-exertion. To survive; M.E patients should avoid both medical bias and the bias of militant patient activism.
 

Conflict in M.E is exhausting, painful and unhelpful.  A common theme in recovery stories is the idea of finding a balance.

 

 
Instead of rejecting rest or exercise outright; M.E patients can modulate their activity level in real time to create an intelligent response to their M.E.
 

 
I stopped representing people with M.E in 2017 when I found the bullying of doctors and patients was widely supported.  I am strongly opposed to all forms of militant M.E patient activism and those charities and academics who conceal or even romote personal attacks
 


The diagram below seeks to integrate and synergise all responses to M.E.  It is founded on the idea that, like the story of the blind men and the elephant, everyone involved was in some sense right about M.E.  We need to work together to gain a complete understanding.
 

 
I was ruthlessly bullied by M.E activists. In fact I was targetted for personal attacks and social shun ever from the moment I stood against the widespread personal abuse and hatred that runs through M.E patient activism.  Here's how a succession of M.E patients and activists described me:
 
 
A thorough job, no? :D  It is hard to help people while they are being so violent.
 
I was told by one national M.E charity founder that I was to be left to be bullied so others can continue to work with an activist who sends out threats and abuse.
 
More concerning, however, is the fact that abuse is openly promoted by a leading researcher allied to activism.  
 
My experiences left me in no doubt of the danger associated with M.E patient activism:
 
 

 
I am very proud to have published almost 1,000 videos advising people with M.E to reject the abuse of doctors and patients. I am certain that this is the first step that every M.E patient must take on the road to recovery.
 
 
 
 
To protect my health I have decided that I must go no-contact with all M.E patients and complete my work for them without their help.  This will add time and limit the amount of assistance that I can provide.  However, I have received one bit of advice that keeps me going:
 
 

 
All of these ideas and many more are to be found on this blog.  My aim is to write 1 million words on M.E and to run the London Marathon.  At that point I will consider my time with M.E to be over and I will put the experience behind me.
 
My new work here on Regeneration Blog will expand upon the management ideas above to define what I hope will be a new treatment option for all M.E patients from the most severe to those simply struggling along trying to lead a normal life. 
 
I wish all patients the very best of luck.  It was an honour to be your advocate and representative and I hope with all my heart that you will be able to recover as I have done.



 
Take care,
 
James/.
@batteredoldbook 


 
 

Looking glass.


 

Prize poem.

 

Simon is the sunrise,

Peter is the noon.

Jane is the twilight,

and Nigel is the moon.

 

The scale of it all.


 

Peak Capitalism

 When Amazon deliver products straight to a skip outside your house.

"All of time and space. Everything that ever happened or ever will. Where do you want to start?" ~Doctor Who.


 

Statement.

It is wrong to brand an M.E patient sick and crazy.

The personal attack harms the patient and the nature of the attack increases the social stigma carried by all. 

Good science cannot survive within a community that tolerates and promotes bullying.

 #MEAwarenessHour #pwme #mecfs

I am The Doctor.

Puncture repair kit.

For a very long time I have felt punctured.  Like happiness and joy were slowly seeping away from me.  And of course my family and my friends would fill me up again whenever I saw them, but in their absence, I would deflate.

I was forced to find an answer for my own M.E.  It was kill or cure.  I had stood against abuse in my community and found that my community wanted to keep the abuse and to lose me.  Since I was well-known and well-liked the process took them a number of years.

People came, friends came, and one by one they broke my heart.  Like my hero, The Doctor, I have two hearts.  My own feelings and emotions are carried in one.  The other is for other people.  I feel huge pain in both.

Imagine if someone lied about you, an M.E patient.  It would hurt. It's a horrible thing to be deliberately misrepresented.  It is awful to live the experience and watch as people think less of you and treat you differently.  But imagine if you could also feel the pain of being the very person who would do such thing.  You are hurt twice over.

Abuse has two victims.  Both target and perpetrator are harmed by every instance of mistreatment. 

Now that I am recovered and energy surges back throughout my veins and arteries, I fall over myself trying to achieve and be productive.  M.E patients are a valuable, untapped, resource.  They just need a little care and a little science to get them restarted, to get them back in the game.

Extracting myself from M.E advocacy was an unbelievably painful affair.

Though, I am away from this community and my body is repaired, my heart remains punctured.  Darts with hollow barrels allow hope and happiness to escape.

And though I am not responsible for much of the damage done to me, it remains my job to repair it.  During my dramatic and on times quite daring escape from M.E, I have found it necessary to end friendships, sever family ties and reject academics and physicians.  As I have done this, so the punctures are repaired.

I have often wondered why so many people hate and attack M.E patients.  They are sick, it seems so perverse.  But, then, this is the point.  Society too is sick: Good is bad, and bad has become de rigueur.  Beyond this, I guess M.E patients have a simple, basic, problem:  M.E forces them to tell the truth.  You cannot fake being well for very long.  In a society that demands pace and positivity, M.E is a deeply uncomfortable reminder that life can also be so, so, slow and really very hard indeed.

When people come and attack I am twice hurt.  Once for me, and once for them.  It seems irrational to me for patients to attack people who are trying to help them.

When you harm an altruist, you attack your own interests.

But you know, this is the toxicity, the smog that increasingly surrounds and envelops M.E patients and also the wider world.

Friends; Attend to your hearts.

Can M.E activists be deprogrammed?

In The Terrible Sieve I talked about the necessity of rejecting all those M.E patients who I cannot assist.  If you're a patient who sends researchers personal attacks, you are dangerous to approach and cannot be helped at this time.  Likewise if you know or suspect the truth about M.E patient activism, but choose to lie about it, your lie will hurt you and every other patient that it touches.

M.E activism is surrounded by a miasma of misinformation and propaganda.  There is a temptation therefore to at least try to deprogram those M.E patients who have fallen under its cult-like spell.  To this end we can challenge some common myths and misconceptions within M.E activism.

Dangerous Myths in M.E Activism.

  1. M.E Activists don't send abuse.
  2. Abuse is rare.
  3. M.E patients are victims of a smear campaign.
  4. Abuse is warranted.
  5. Activists are fighting for good science.
  6. Behaviour doesn't matter.
  7. Exercise harms M.E patients.
  8. You can't get better.
  9. The M.E community supports M.E patients.
  10. Pace is nonsense.
  11. The Psychiatrists are evil.
  12. I am trolling M.E patients for writing this.

Now, I'm not going to put a huge amount of energy into this work because I am addressing adults who should already know that sending abuse to researchers and patients is wrong.  It should go without saying that concealing and suppressing reports of harm is wrong.  And it should be clear to all of you that the encouragement of bullying stands against science and against all hope M.E patients can have of an improvement in their condition.

 

Addressing the myths

1. M.E Activists don't send abuse.

M.E activists' abuse of M.E patients and doctors is a matter of public record. 

2. Abuse is rare.

10,000 M.E patients personally attacked a single physician via an online petition. 

3. M.E patients are victims of a smear campaign by doctors.

In fact British medicine consistently suggested that abuse was the work of a minority of patients. 

4. Abuse is warranted.

Since we do not understand M.E, we cannot be certain that anyone is hurting us, or intends to hurt us via treatment. 

5. Activists are fighting for good science.

A professor allied to activism has given his public permission for anyone who disagrees with his views to be personally attacked.  This is the antithesis of science.

6. Behaviour doesn't matter.

The effect of patient behaviour is built right into the traditional primary symptom of M.E, Post Exertional Malaise, i.e. illness that follows on from a specific behaviour.

7. Exercise harms M.E patients.

M.E does not magically release an M.E patient from their mental and physical requirement to exercise in order to maintain health. 

8. You can't get better.

In fact patient reports of improvement range from good days, weeks, and months to remission and complete recovery.   

9. The M.E community supports M.E patients.

Leading charities, activists and M.E patients will not address reports of threats and abuse.

10. Pace is nonsense. 

At the very least The Pace Trial contains a great description of the CBT/GET process. 

11. The Psychiatrists are evil.

British psychiatrists convinced medicine that patients were telling the truth about being ill. This improved the lives of all M.E patients.

12. I am trolling M.E patients for writing this. 

No matter how much of a drubbing I personally receive; the facts of the message remain.

At this point I am tempted to supply reams of examples.  I have well-known M.E activists and journalists acknowledging abuse in private and refusing to to discuss it in public.  I have evidence that M.E patients attack researchers.  I have major M.E charities acknowledging the problem of bullying and vicious attacks from M.E patients.

My feeling, however, is that M.E patients need to seek this evidence themselves, for it was through the effort of asking questions that I educated and improved myself and then went on to break free of community dogma.  The answers are out there, they are not even well hidden any more.

My years as a patient advocate are long over.  I deleted my work to put huge distance between myself and a patient community that supports cruelty and harm.  I have had to move even further away from M.E patients, going "NO CONTACT" simply so that I may be able to share my experience of recovery and the method by which I regained my strength and stamina.

M.E is an awful disease.  Patients are as lonely and isolated as if they were floating in the depths of space, and they are as sick and in need of medicine as any human being ever can be.  However, not all M.E patients' suffering is due to the illness or to external mistreatment.  Every M.E patient has a duty to rid themselves of the toxic ideas and biases that help to lock them into chronic illness.

 

How M.E community myths affect how M.E patients are treated.

1. Myth: "M.E Activists don't send abuse."
The world sees both M.E activists' abuse and their widespread denial of the fact and, fairly or unfairly, backs away from all M.E patients.

2. Myth: "Abuse is rare."
The M.E community has gained itself a reputation for abuse.  International news has reported M.E activists' abuse.  The M.E patient community has successfully self-stigmatized.

3. Myth: "M.E patients are victims of a smear campaign."
M.E activists' rejection of all personal responsibility for their actions is red warning flag to others.

4. Myth: "Abuse is warranted"
From outside, such talk makes M.E patients look like bullies.

5. Myth: "Activists are fighting for good science"
The world saw the Pace Trial authors discussing their work in public.  The world also saw academics allied to M.E activism yelling "f-ck you!" at its authors and encouraging personal attacks.

6. Myth: "Behaviour doesn't matter"
Pretty much everyone disagrees with this.

7. Myth: "Exercise harms M.E patients".
People outside of M.E don't believe this.  They would respect you more if only you said: "Help me to exercise, help me to work".

8. Myth: "You can't get better".
This looks to others like an utterly self-defeating line of thought.

9. Myth: "The M.E community supports M.E patients."
M.E patient community behaviour can look like that of a mob or a cult.  The online M.E community cannot even agree that it is wrong to call M.E patients "sick and crazy".

10. Myth: "Pace is nonsense."
The authors and publishers of Pace stand by it.  Even M.E activists and allied researchers considered the study to be sound enough to be re-analysable.

11. Myth: "The Psychiatrists are evil."
From outside the M.E community, the branding of physicians as Nazi garbage looks prejudiced, ignorant and cruel.  The regularly and the intensity of M.E activists' attacks looks like stalking and elicits sympathy for those targetted.

12. Myth: "I am trolling M.E patients for writing this."
The M.E community attacks and harms those who try to help, this much is clear to all.

M.E activism poses a danger to all M.E patients. Of course, those M.E patients directly targeted by M.E activists will suffer, however such actions also discredit and stigmatize all M.E patients.  I am aware that not all M.E patients are cruel and abusive, however, wherever I go in the world, I always warn people about M.E patient activists.

I was your advocate from the 1990s until 2017.  There are two things that really stick in my mind.  Firstly; there really is a huge amount of hate within the community.  Sure, the M.E community is glued together by an awful shared experience of illness, however it is also bound by a shared reaction to that experience.  Many, many, M.E patients have fallen into hatred.  They target doctors, especially those who tried to help them to exercise.

This hate bubbles and boils and spits in the "horrible cauldron" of M.E patient activism.

Secondly; When you look closely at the hatred within the M.E community you find that it is largely founded upon misinformation, ignorance and myth.  You find also that hatred has been stoked and harnessed by leading activists for their own ends.

M.E patients need to challenge their most fundamental beliefs for those beliefs imprison them and bring harm to others.

I can imagine a situation where the psychiatrists who first validated M.E patients' experience of illness had taken a different line.  Had these physicians backed rest instead of exercise as a response to M.E, by now patients would have realised just how much life they'd lost, how much damage inactivity had done, and be viciously attacking and hating them for promoting bed-rest.  They could not win either way.  I conclude that these doctors are being used as scapegoats. 

In truth; conflict is a part of the condition itself. With M.E, exercise both helps and harms.  Where patients blame their doctors for their condition and fall into hatred and dogma, they will suffer long term.

Where doctors and patients navigate the paradox together they may achieve healing.

I suppose I should answer the question.  Can M.E activists be deprogrammed?  Well, let me tell you what the founder of an M.E charity told me when I stood against an M.E activist who wanted the right to target and abuse M.E patients:  If you leave patient advocacy James, the bullies will win!

Well, you know, I was up for defending M.E patients from such a monstrous betrayal: M.E activists who push M.E patients' voices back into the shadows do the greatest disservice imaginable to those they claim to represent.  The M.E community, however, was not prepared to defend its own.  It preferred to conceal and support the abuse of M.E patients.  Even the charity who sent me the support quietly withdrew it.  In the end, "the bullies" did win, but they didn't win me.  They won all those who allowed themselves to be subjugated.

I don't think M.E patients can be deprogrammed.

By this I mean that I don't believe that people with M.E can be changed much from the outside.  If patients can tolerate watching their friends and representatives being targetted, abused and cast out into painful exile, this document isn't going to change them.

In reality; change is going to have to come from within.  M.E patients need to work out who they truly are.  They need to look in their hearts and then at the values of their community.  They need to look at what they say in private and what they say in public and if there is a difference, they need to make a change.  M.E patients need to choose between the truth and the lie.

M.E patients cannot be deprogrammed, but they are in charge of their own destiny.

Makes and breaks the lock


 

Oh, you sexy thing!

Hey. M.E patients! Stop listening to people who want you to hate doctors!

Seriously. Read this instead:

We should measure progression not through gradual activity increase, but through gradual increase in adherence to a normal activity curve.

I mean, it's very good isn't it? You could even find yourself working, with your doctor, to make measurable, objective, progress against your M.E *without increasing your overall activity level one jot!* 

And you know what?

If it turns out you do have a virus, or it turns out you live next door to toxic waste dump or whatever, and you cannot get better: this system reveals and exposes that fact.

Your doctor can see you trying and will know that there must be something else perpetuating your M.E.


Oh, you sexy thing!

Fresh start.


 

Don't smoke.

 

To be frank, as an M.E patient of decades, I never really thought I'd get better.  Ever, I mean.  I honestly thought I would be ill and in pain for the whole of my life.

Smoking took away some of the pain and replaced all the little joys that (I imagined) an ordinary life would provide.

I have now made huge gains against M.E: to the point where it is a bit silly to claim that I'm still ill (I walked 15 miles only today), but I find that I've given myself COPD and that my new life is limited not by unfortunate illness but through my own dumb choice.

When I am being kind to myself I imagine that there was no other way through it, M.E is very, very tough to stick on times, but there were other ways forward, I'm sure of it.  I know a few M.E patients who smoke and I'd like to tell them: 

Stop.  Just stop. 

Smoking cigarettes now can lose you a big chunk of your future recovery.  Stop.  It's hard.  But so is everything that's worthwhile.

The overall aim is to never quit-quitting: Each time you fail, you learn something for the next attempt.

In happier times, the M.E patient community supported me in my efforts to stop smoking.  Over the course of a month I made a silly hat image each day for my friends in M.E to laugh at.  It was great fun, a great distraction from the intense cravings, and a great head start in my race to escape smoking.

I didn't think I'd ever, ever, be running up the side of a mountain.  It's only my lungs that slow me up now.  Don't smoke, M.E folk.  You never know, you might end up getting unexpectedly better too.
 

Good luck!

Looking towards Central London


 

Leaf Memory By Stephen Duncan


 

The Memory Effect.

It is really strange to be able to sit here and write that I walked 70 miles last week.  I feel like such a fraud!  How can an M.E patient walk 70 miles?  And then I remember.  I don't have M.E any more!!  Like, what?!  How?!  It's hard to believe.  It's hard to get your head around.

I got ill aged 12.

My whole adult life has been about managing M.E and now, suddenly, I don't have to.  It's weird.  It's genuinely weird, but in a good way, of course.

The 70 mile figure is particularly impressive if you know M.E.  On average I was doing 10 miles a day and therein lies the remarkable bit... did you notice it?  I wrote 10 miles *a day*.   Meaning that I walked 10 miles and then the very next day I was perfectly capable of walking another 10 and another and another.

My life with M.E has been all about weighing up the cost of every single mental and physical exertion.  Everything I do, well, everything I used to do, brought on symptoms.  M.E patients call it "pay-back".  Payback is highly predicable in so far as if you're going to exert one day, there's no real point in planning anything much for the next, or the next, or even a few days after that.

Post Exertional Malaise is more than exercise intolerance, it is illness that follows mental or physical exertion.

Exertion in M.E is like tossing a pebble into a still mill pond.  Ripples ride out across the surface and affect days, weeks and months into the future.  Too many instances of exertion and the surface never seems to calm down, the pain never seems to go away, you know?

M.E patients always end up with the phone battery analogy.  Modern smart phones are much better, but in the dark ages, (like, what, 15 years ago?) mobile phone batteries would lose their ability to hold charge.  They wouldn't die.  They'd just become useful and useable for shorter and shorter amounts of time.  Just like our M.E riddled bodies.  Most M.E patients understand this.

"I feel like a battery that won't hold its charge."

In fact the abstraction continues to hold, for the way you charged and discharged a mobile phone was important.  Phone batteries would have what was called a "memory effect".  Lots of small top ups would lower overall capacity whereas a few cycles of moving from fully charged to fully discharged would mean better performance.

In my life with M.E every so often I would catch a night's sleep that "worked".  I'd wake up refreshed, as I assume nature intended.  These deep sleeps often followed high levels of exertion, but of course high exertion more often than not ended in disaster.  I would go to bed in pain, wake up too early in pain and then spend the whole of the following day in pain.  Consequently, I'd most often live a life of low level daily activity followed by low level and low quality sleep.

With a body that won't hold its charge throughout the day, poor recharging at night and intense budgeting of one's meagre daily energy allowance, a life with M.E is of both low function and high difficulty.  It is a low quality life and yet very, very, hard to manage.

It is not so easy to navigate a day when that day seems to be heavily under the influence of those in the recent and not so recent past.  For most of my adult life my actions the day before, the week before or the month before would determine my current level of health, pain and ability.

My body doesn't have this memory effect any more.

These days, when I go to sleep, sleep works.  It resets and restores my health like a new life in a computer game.  Yeah, I'm 47.  I don't wake up feeling like a 20 year old, but then, I don't know what this is actually like.  I got ill at age 12.  I have no idea what it is like to be a young adult, to have energy pouring out of me, for it never happened to me.  All I really know is that my life now, is much better than it was at age 20.

As I've previously noted, it is hard (and contentious) to determine the direction of cause and effect in M.E, however, for me, my recovery is all about the removal of this memory effect, the hang-over from yesterday.  For me now, a new day really is a new start, I am not always indebted to the "sins" of my past.  Yes, if I over-exert today I will suffer, I will feel fatigue, but by tomorrow the decks will be cleared and I'll get the chance to do it all over again. And I take it.

I could walk 10 miles a day, every day, for a year if I wanted. 

The question is: Can I help you to do the same thing?

Italy.


 

One million.


  • 1,000,000 views of my work on M.E.  Yep, done.
  • 1,000,000 steps out of M.E. Yep, done.
  • 1,000,000 words on M.E - Am on it right here, right now :)
  • 1,000,000 dollars?  No. M.E needs good science far more than it needs funding.
  • 1,000,000 M.E followers? No. I can see that patients cannot do what I ask of them.
  • 1,000,000 people cured of M.E? Ah. Now you're talking!

The Oncoming Storm.

 


M.E patient activism.

M.E patient activism eats people.  And then it spits them out all the same.  They shout.  They attack doctors.  They attack patients.  And they cover it all up.

Today M.E activism cost me another friend.  I detest M.E patient activism.  It wasted my time.  It laid waste to my mental health.

Activism brought me to the point of severe M.E and then it laughed at my loneliness when I was hungry and cold.

M.E patient activism is rotten to the core.  The people who really need to care the most are the M.E patient activists themselves and they care the very least.

Stage an intervention. Hug and support them. But don't let M.E patients anywhere near M.E patient activism.  M.E patient activism eats people. And then it spits them out all the same.

 

See also: Can M.E Activism be stopped?, Are M.E patients being radicalized?, Predictive Text, and The Unsaveable.

 

Update: 

I find that I made the correct decision in ending this friendship. I sad about it, but stronger for it.

The Time Machine.

 


When two tribes go to war.

A biomedical researcher starts to look at M.E.  It's classified by the W.H.O as a disorder of the nervous system (G.93.3).  He sees that M.E often follows on from viral infection (eg EBV) and understands the issue immediately: The patient becomes ill after mental or physical exertion.

Our researcher then talks to other biomed researchers who agree.  It seems insane, perverse, cruel even to attempt to treat patients who report illness after exercise with exercise. They conclude that the psychiatric researchers who've been doing just this don't know what they're talking about.

They then make the bold claim that if graded exercise helps a patient improve then said patient never had M.E.  This claim is pure symptom-denial.  It would mean that every M.E patient who reports Post Exertional Malaise, but who then goes on to report recovery would have their diagnosis removed and years or even decades of experience of P.E.M invalidated.

In truth; Gradual exercise increase is going to be a part of every single recovery from M.E.  Research into how to restart exercise is always going to be relevant and useful.

Meanwhile a psychiatrist has already had his own revelatory experience : He notices a feedback loop.  "Of course!", he thinks: M.E is is behaviourally re-enforced.  Patients are unfit and experience symptoms as a result, but in response they choose to rest.  This makes them increasingly unfit and this increases their symptoms!

His colleagues agree as this is a known class of problem.  Once the cycle is broken, in this case by exercise, "the chronic disease" disappears, freeing the patient.  M.E patients just have to suspend their belief in the permanence of M.E for long enough to be freed from it.  They conclude that a combination therapy of CBT to challenge illness beliefs and Graded Exercise therapy to deal with de-conditioning resulting from inactivity will treat M.E.

They experience two problems.  Firstly, patients report harm from exercise therapies.  It is a consistent theme.  Secondly, the illness beliefs that sustain the postulated feedback loop are, over the course of two decades radically strengthened by the rise of patient advocacy and then the dominance of militant patient activism.

Highly aversive symptoms in response to exercise, graded or not, are a hallmark symptom of M.E. Breaking this effect is a non-trivial task - for both patients and their physicians.


We can see there are two major positions here and the problem is about to get more complicated.

The biomed researchers find objective evidence to support their case that M.E is a biomedical problem (Eg: two-day cardiopulmonary exercise test, CPET).  Not to be so easily outdone; the psychiatrists (correctly) point out that behaviour can and does cause radical biomedical changes so the existence of such biomedical abnormalities does not settle the question one way or the other.  And, anyway, they've created a study, "The Pace Trial", that settles the matter!

A deep and bitter conflict develops within M.E research over the simple direction of cause and effect within Myalgic Encephalomyelitis:

Does M.E cause broken, inverted, sleep, or does poor sleep bring on the symptoms of M.E?

Does M.E cause low activity, or does low activity cause M.E? 

Does pain limit movement, or does lack of movement bring on pain?

Etc. Etc.

At this point a biomed researcher takes a look at the "Pace Trial" and goes "Hold on, wait a moment!!".  He's probably independently noticed the key query about this trial that I myself sent to Dr Tuller some years ago: Patients were repeatedly told conclusions during the trial.  To a biomedical researcher this is the equivalent of a doctor on a drug trial winking to a patient and whispering ("You're lucky! You're getting the real medicine! *Double thumbs up*), it's unacceptable.

At this point the biomed side loses it.  To some of them, Pace seems either flawed or fraud, and they conclude that M.E patients need to rest while proper biomedical research is done.  The questions over the running of "Pace" are used to write-off all the work that has been done thus far by psychiatric researchers on CBT (Cognitive challenge to illness beliefs) and GET, Graded Exercise Therapy, (Now more correctly GAT, Graded Activity Therapy).  

Biomed then go further, much further.  Understanding and acceptance of the biomedical point of view is put forward as proof of intelligence: ("We know it’s a molecular disease, people who say that’s it’s not are a fool and they are totally ignoring reality, you can call them a fool you have my permission.” Ron W Davis, OMF 2017).  No matter how bad you may believe the "The Pace Trial" and CBT/GET to be, at least we had the freedom to debate them without suffering personal attacks.  There can be no bigger scandal in M.E than academics publicly endorsing or permitting attacks on their research rivals and those M.E patients who agree with them.

Psychiatric researchers were unmoved and unabashed by the hoo-hah and hokum surrounding the debate.  They had already pointed out that all conditions should be approached from the perspectives of both mind and body.  The reductionism involved in treating complex, systemic, illnesses as purely molecular diseases does seem quite unjustifiable.  This may be why the biomedical position in M.E is often supported by personal abuse rather than argument. 

Abuse is a way to win an argument.  It's just not a scientific way to win an argument.

The Pace trial remains a study that attempted to compare the effects (and the safety) of three behavioural interventions in M.E.  After the exclusion of the objective Actiwatch data it draws conclusions from subjective measures.  Whatever you think of its methodology, analysis or re-analysis, the Pace Trial contains a very good description of CBT/GET as an intervention for M.E.  As I do not reject the utility of such treatment for M.E patients, I refer to The Pace Trial notes often.

So. Which tribe is right? Is M.E a physical or a mental problem?

The way I look at this question is via my family's experience with another condition, asthma.  When my child has an asthma attack (thankfully very rarely these days), I tell them to do what I did, my father did, and my grandfather did, (it's the same kind of approach recommended by the UK NHS):

Sit down.

Calm down.

And take your Salbutamol.

My children don't know much about what causes asthma but they know that these actions work.  It is great, it is amazing in fact, to be able to switch-off a massive asthma attack with just a few puffs of a biomedical agent.  But then; the other treatments really help too.

When one is unable to breathe the last thing you want is a doctor hovering over you going "YOU CAN'T BREATHE!! YOU COULD DIE!!!".  Stress is a trigger for asthma.  A calm and soothing approach is appropriate and this is true of self-care also.  If you get stressed out your Heart Rate climbs and you demand more oxygen from a system that's already struggling.  This panics you further.  See?  A genuine psychological feedback loop, (just like the psychiatrists talk about), the knowledge of which helps me TO NOT DIE from an asthma attack.

The instruction to "Sit down" is an interesting one, for it's a pure behavioural response.  Asthma is very often triggered by cold air, wind or our breathing (eg: while running or laughing).  Sitting down and sitting still removes theses triggers without interfering with our ability to breath too much.  It's a behaviour that changes our biochemistry and our objective bodily response.

"Sit down" and "Calm down" are of most help in the absence of a SABA like Salbutamol (Albuterol), however in my family's experience, they assist in every case, in every attack.

An asthma attack is a crisis, it is literally life-threatening, and our approach is a three pronged affair: Behavioural, Psychological and Biomedical.

Imagine if the purveyors of Salbutamol wouldn't talk to the behaviourists?!  Imagine if psychiatrists refused to prescribe a SABA?!  Imagine if the psychological triggers for asthma were considered "junk science" by biomedical proponents and researchers were targetted for abuse?!   Imagine if asthmatics were told to pick a side!!  It would be ridiculous, absolutely ridiculous.

I'd think that this was all very bad science indeed. In fact I'd walk quietly away from it and my children and I would go on using all three treatments to deal with our asthma.

You see, the philosophical question "Is asthma a physical or psychosomatic condition?" is far less useful to patients than the more basic and practical question: "What helps to make my asthma go away?!" 

And so it is with M.E.  What helps?  Are there behaviours that help?  Are there useful psychological coping strategies or treatment strategies?  Are there drugs that help?

Over the course of 35 years I did find some little things that help.  Eg: I found that by waking up 3 hours early and taking paracetamol (Tylenol) helped prevent pain from waking me fully up far too early each morning.  The additional sleep made me feel so much better that over time I didn't need any medication. The fact that I had found some measure of control in my life with M.E made me feel happier.  As did grieving for my previous active life and my career in medicine. Avoiding stress helped too.

I had much less success (ie, I fell on my ass) when I tried to use an anti-histamine based sleeping aid (Diphenhydramine) in order to regulate and deepen my sleep.  And over time I found that my own behaviour could turn a day's illness into a month of miserable bottomless fatigue.  Worse, there were certain psychological states that were so awful that they dwarfed the physical M.E symptoms entirely.  Eg: When you have a stream of vicious, hateful, abuse directed towards you from activists, the mental state engendered needs to be addressed as a priority.  It is dangerous.

An M.E patient should should add every treatment that they can to their personal armoury.

The above includes any and every behavioural, psychological or biomedical approach that works for them at any particular time. In future articles I will for example suggest when and where the use of CBT, Graded Activity Therapy, pacing, exercise and rest can help M.E to recover their function.

The war between researchers is a symptom of science collapsing within M.E.

Patients need to stand well back from it.  They will need to protect themselves from it and from the extreme biases thrown out from it.  It is not currently safe to discuss exercise, illness belief and recovery from M.E in public. 

Biomedical, behavioural or psychological ideological warfare should be set aside and M.E patients should use all available avenues to corner and reduce their symptoms and recover their function.

The real issue in M.E is the fact that coping strategies are almost always at odds with treatment strategies.

An M.E patient has to make an impossible choice:  Do they live with ever increasing symptoms while trying to gain fitness?  Or do they try to live without symptoms but also without exertion?

"As long as I don't try to do anything, I'm not too disabled."

The burden of this dilemma is best shared between patients and doctors. The war is best left far behind.


"When two tribes go to war, a point is all you can score."

~ Frankie Goes to Hollywood, 1984 


Winter will end.

Blog concerns.

M.E patients as a group have not rejected the abuse of doctors and other patients performed in their name.

On the face of it this choice is self-punishing.  When we remove, to safety, all those targetted by M.E activists the only ones harmed by their vicious attacks are the patients themselves.

M.E community abuse generates stigma, discredits M.E patients and pushes help away.

M.E community leaders and their allies in research have led M.E patients towards bad science.  While some have made huge personal gains these have come at far greater personal costs. 

Overall, I think M.E patient activism has added about ten years on to the suffering of each and every M.E patient.

Unfortunately, however, many of us live within an increasingly aggressive and perverse social order.  I do not believe M.E patients within these societies have 10 years before the tidal forces that withdrew my food grow to the point where a diagnosis of M.E is quite an unsafe thing to have.

Both M.E activism and social aggression towards the sick and disabled require that M.E patients get well as soon as is possible.

While I am forthright in my views and indeed my disgust at M.E community behaviour, I write with the sole intention of assisting all M.E patients.  I have been concerned that my challenge to M.E patient behaviour herein may be perverted and used to harm M.E patients in the future.

I have considered this matter deeply and have rejected it as a reason to discontinue.  Firstly, I am not responsible for the abuse arising from M.E patient activists.  My advocacy was founded on a peaceful approach, one that that specifically rejected by those patients who decided to use bullying to get what they want.  I have protested this awful choice to harm others with almost one thousand videos.

Secondly, the operative word in the above is "perversion".  It has been pointed out to me that any thing I say, even a treatment or cure that I may publish could also be perverted into a means of harming patients.  

Bullies bully, haters hate and those with malign intent reverse others' good intentions.

There is, I'm afraid, no way to avoid this.  However it also true that this sad fact is not, in of itself, a reason not to try to do the right thing.

It remains clear to me that the only real hope we have here is to come up with a treatment for M.E as soon as possible.  I will keep this blog open for now and endeavour to more closely follow that aim, but I will have to be far less circumspect.  There is simply no time to explain and go through every decision that I make.  Perhaps there will be after the fact.