Featured Post

New direction.

Sorry not to have updated the 'blog for a week or so.  I've been wondering whether I should change my approach.

As I repair some of the damage done by patient activists; I find less and less bothered by all the deception and warfare out there and more and more interested in passing on what I've learned about recovery to those few M.E patients who want to hear it.

I was ill for 35 years and now I'm really not.  This story needs to be told.

I've a new plan which I'll detail here when I get a chance.

Until then; Best wishes and good luck.

James/.



Trust.


Resistance to behavioural interventions.

Prejudice is so very strong in within the M.E community.  I don't have a lab or cool stuff to play with, so my attempt to help M.E patients is going to have a behavioural bias. So what?

Just because people suggest behaviour changes, it doesn't mean that they blame M.E patients for being ill.

There is no perfect behavioural procedure for removing yourself from M.E right now, so no-one can be held accountable for failing to follow it!! 

In my experience blame in M.E stems from simple cruelty and perhaps the desire to push broad social problems back onto the individual.  Suggestions for behavioural changes come from a very different place.  In my view they stem from a desire to improve M.E patients' situation.  

Take "Pacing" for example.

Pacing is a behavioural system for managing M.E.  It has been widely adopted and praised.

It is strange to think of pacing as a behavioural intervention, but that's exactly what it is.  Pacing encourages behaviour change, the moderation of mental and physical exertion, the maintenance of limits on energy expenditure throughout the day.  These things are just as much a behavioural approach as Graded Exercise Therapy.

In fact; The importance of behaviour in M.E is built right into patient-centric definition of the condition.  Here we find that the primary symptom of M.E is considered to be Post Exertional Malaise.

When you exert ~ you get ill.  IE:

Your Behaviour matters.  


Through the idea of PEM, M.E patients already accept and know that their behaviour has a radical effect on their physiology.  But why can't it have a positive effect also?

What's concerning here is bias. I remember the founder of yet another M.E charity telling me during our 7 hour meeting:

"I tell doctors, you can't make it better, but you can make it worse!!"

This seems more than a little one sided, for those physicians who promote exercise are doing so, because the ability to exercise is recovery when it comes to M.E.

There are doctors who promote rest, pacing, support groups, and sympathy as a response to M.E, however, each of these behavioural choices have also been linked with a potential downside, a negative effect on health, (Eg: torpor, acceptance, extremism, secondary gain).

Overall; I don't even think M.E patients have a problem with behavioural treatments for M.E per se.  I think that's a red herring.  I think the truth here is simpler:

M.E patients have a problem with exercise.

Unfortunately any recovery or improvement from M.E is going to open the door to exercise and therefore make sufferers liable to receive abuse from M.E activists who are dead-set against it.

The same is true for researchers who suggest exercise as a part of behaviour change. The resistance towards exercise is magnified into a broader rejection of all but pure biomedical intervention and often crosses the line over into personal abuse.

Rejecting behaviourism within M.E removes a vital means of understanding exactly what M.E is.

M.E patient behaviour is like water: It takes the shape of, (and therefore reveals the nature of) its containing vessel, in this case M.E.

When we deny, dismiss or invalidate patient behaviour we lose sight of the nature of M.E and are less able to respond to it.

I refuse to dismiss patient behavioural adaptations to M.E as delusional, misguided, or self-perpetuating.  I think they tell us a huge amount about the condition.  Equally, however, I refuse to reject medicine's constant push towards necessary exercise.  Free exertion, without payback is, and must always be, a central aim in recovery.

Though the issue is muddied and confused by biomedical zealotry, the importance of behaviour and behaviour change is already accepted by both M.E patients and those who attempt to treat them. Exercise, however, will remain a contentious issue within M.E for some time.

Friend.

Personal update.

You know, I've been ill these past few days and my body has been sending "I'm depressed" kinds of messages to me.  I'm used to this having been ill for so long (a sum total of 35 years).  I'm also used to having my thoughts and feelings and even dreams coloured by my ill-health.  I am, however, learning to resist!

I made some awful mistakes and missteps over my years as an advocate for M.E patients.  I fell into the trap of believing that medicine was the great Satan here.  I supported, campaigned for, and trusted people who really didn't care for me, or people with M.E, at all.

But in the end I came through this experience hugely enriched:

I got rid of M.E, a disease that has blighted my whole life.

I contributed a tonne of good science and I stood firmly and publicly against the abuse of both doctors and patients.

Gosh. I am pleased with this. Yes, yes of course I'd like to have been able to help all the other lonely, suffering people with M.E, to have brought them all with me to this place of recovery and improvement but the rule here is clear:

Attend to your own oxygen mask before helping others.

I needed to stand against abuse and threats and shun in order to get well.  I needed to see that "my" community did not reject these things.  I needed to watch them destroy the lives of people who'd tried to help them.  Only then, when I was aware of the full truth of the situation could I ever hope to help show the way to others. 

Abuse harms its targets and it keeps M.E patients locked in endless, poisonous, wrath.

I've published almost 1,000 videos standing against abuse.  I have removed myself from harm's way and distanced myself from those who harm others.

I dare say there's no-one in M.E who more clearly and regularly rejects the abuse of M.E patients and doctors than I.

And this is deliberate, for I have one last thing to do in M.E: to share how I got better.  

I now have my final position on M.E activism circa 2020: "It's rotten". 

And I think I am ready to be happy and content and positive again.  Because it is exciting!  I've a new idea about what M.E is and how people may escape it!  If it helps just one other person it will have been well worth the effort.

M.E is a wet, black, peat bog consuming your limbs and smothering your life. M.E activism is marshland as far as the eye can see, filled with Will-o'-wisps and false trails.

It is very tempting to put all this horror behind me and live the life that has been denied to me for so many decades.  But M.E patients are defined most by what they have lost and what they are not.

I am not a doctor.

And so my life will always include trying my very best to help and to be of service to others.

Onward!


*Marches back into the swamp ...for you if you want*.

Love this.


 

Don't get sucked into M.E activism. It's rotten.

Don't get sucked into M.E activism. It's rotten.  

It's rage-filled. It's a tar pit. It's misleading. It's misled.



Do recognise the paradoxical nature of your situation:

Exercise harms, yet exercise helps; Rest harms, yet rest helps.

With M.E it seems like you're damned if you do and damned if you don't.

The route out of M.E is tight, narrow, and convoluted, but others have made it!!


A word on inactivity.

Because there's a mountain behind our house and not a field or a track, I get a massive insight into my fitness level and how it changes. Basically, if I have to stop to rest at the little stone bench, I'm like WTF? I could power up past this, like, yesterday!?

Well, okay not "yesterday", that's hyperbole, but it's almost right: In fact it's is a real eye opener to see how just a day or two skipping-off and avoiding walking suddenly causes a massive contraction in what I am able to do. 

Fitness, for me, is massively sensitive to inaction. I had no idea. Really.

I mean; I've done, what?  Three million steps since the end of march this year.  But if I take just a day or two off the heavy stuff (IE I walk less than 5 miles/day) suddenly, I can't make it past the little stone bench without at the very least pausing to regroup.

This, Post Inactivity Malaise, is silent.  It is real and it is profound.  I am simply shocked by it.

And people with M.E may, rightly, say: "But we can't exercise because of Post Exertional Malaise!!" and I'd agree, having had M.E for 35yrs: I know exactly how horribly severe symptoms can be in response to even minimal mental or physical exertion.

It is ironic, I think, that as M.E patients increasingly work to eradicate medicine's viewpoint they trash the idea of de-conditioning (Post Inactivity Malaise) and just how important it really is, for:

You can only understand M.E when you get the idea that M.E patients are damned if they exercise and damned if they don't.

It is shocking to me, now, to know just how much damage I was doing to myself through inactivity.  I was aware of certain things, of course, I became over-weight, my shoulders froze and my knees started to buckle. But it has been brought home to me that inactivity was causing damage across the board, systemic long-term damage.

I am not here to blame you (or me for that matter).  I know very well that M.E patients get kicked in the nuts (or cash equivalent) when they over-exert and I also know just how incredibly low the bar for over-exertion can be set.

It is hard to imagine giving my younger self any useful advice on this.  Other than treating M.E; there is nothing much that can be done.  I guess I wish I'd kept my joints moving more and sat in this chair less, but aside from this, the seeming inevitability of Post Inactivity Malaise is, for me, a fundamental part of what makes M.E such a devastating condition.

In the absence of a cure, I guess I have to default to the advice I gave on my 1990s website.  Long term, an illness like M.E can have a depressing effect on one's outlook and mental health and this is true of fitness and physical health too.

The advice I used to live by was to occasionally break the rules, blow the energy budget and... pay the price.

The price, in terms of symptom increase and function decrease is worth it sometimes.  The memories and experiences you gain; they restore and rebuild your mental health and they keep your spirits up through the darker hours.  Likewise; getting the body moving is hard, but it is necessary for human health.

Up top.

Short discussion.

While we wait for the ground work, here's a brief outline of what a treatment for M.E could look like. Remember our aim to use ideas from both medicine and M.E patients.

 

 
The dramatic first step: the reduction to a Baseline where symptoms stop actually comes from medicine. Patients often resist saying symptoms are variable, but in this case baseline means an activity so low as to completely remove M.E, Post Exertional Malaise effects at all times.  Though absolute rest is not our aim and brings with it a whole host of problems associated with inactivity, it is hugely reassuring for patients to see that they have some measure of control over PEM symptoms.
 
Acceptance of M.E as a F-serious condition. As an advocate I used to be contacted by people with M.E who were just realising that they had to take M.E seriously & stop trying to "push through". I told them it took me 7yrs to get this idea!! They were doing well if they could do it faster!!
 
Rest - a massive increase in inactivity. In M.E something about activity brings on highly aversive PEM symptoms, *and crucially* the more you break the rules the tighter and more constrictive these rules become. While sorting out this issue wise to keep away from activity.
 
Pacing is where patients are essentially allowed to do what they can manage, whenever they can manage it. This keeps them out of PEM and the risk of lowering PEM threshold. And, I think, this is where patients learn to cope with, manage and then even control their condition.
 
Patients should not progress until Activity Shaping is complete.  This means no naps, no sudden exertions and no sudden drop-outs in power.  An athlete approaches every major exertion with a warm-up & follows it with a warm-down period. If they don't do this, they're likely to pick up injuries. A day is a major exertion. I think people with M.E should create a slow start, a build up to a gradual peak, then warm down.
 
CBT here means CBT(Challenge to illness-belief). You can view it as the opposite of Acceptance (which you can view as CBT(Challenge to illness dis-belief). If a patient has managed to smooth their activity cycle, the idea is they don't have M.E any more & can safely exercise.
 
Exercise should be gradually increased (GET) *in line with the smooth activity curve created previously*. There's no use getting all of the day's target number of steps in one hour of the day! They must be distributed across the cycle, slowly amplifying the activity curve.
 
Free Exercise: At this point (in my experience) there's a huge amount more tolerance for changes and for more sudden and strenuous activity periods. This is the point where the prehistoric dinosaur-doctors' advice to "Go to the gym!!" becomes safe and correct.
  
The last step is Recovery. Throughout all my time helping M.E patients I have always found that they want to get better. Always. The idea that people with M.E choose to remain ill to bathe in "secondary-gain" (eg: welfare; assistance from others) is just nasty & has no place in medicine.
 
 

Sunset at the lake.

In brief.

As time is short; I'll be brief:

People with M.E often miss that in "Return to Baseline" CBT/GET contains a huge measure of acceptance of the reality and seriousness of their condition. 

Likewise; physicians miss the idea that acceptance/pacing is forced upon people with M.E and that fundamentally, M.E patients just want to get well.

Doctors and patients should work together better in M.E.  

It's important.

Anyhow; This is how I got free of M.E:

I basically lashed the two pre-existing ladders together and added a single new rung:

"Switch from acceptance/pacing to CBT/GET when you've normalised your activity-sleep curve."

No sense in flooding a wonky activity cycle with energy, it just makes the highs higher, the drops bigger and the twists and turns more difficult to navigate.

Once you've got a nice simple harmonic motion going between inactivity and activity and activity is aligned with the daytime, that's the moment to start exercising, to re-condition those tires and then, with luck, burn some rubber.

I hope it's the same for you.

You are The Doctor.


The only prize in this game is time.  The only loss in this game is time:

Your time.

You are fighting for your life.  You are fighting for your time.

You have to win time, timelord.

 

On the up.


In summary.

Rejected abuse of doctors and patients.

Integrated all points of view.

Got better. 

*shrugs*

Breaking silence.


 

The Devil's Laboratory.

Let us just say that The Devil is the sum total of human evil.  He is the empty promise of food, the false hope, the unsatisfiable 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 good men:

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 appeared to be nothing more than 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 cold hard cash ("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 reversal, 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 ever increasing warfare.

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

Why would our fictional "The Devil" do something so revoltingly good?

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

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

And then, with cowardice and dishonour and wisdom 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 they 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 begin to see their physicians as evil, "Who but Nazis would torture us 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 all on a widescreen like a football match.  Activists intercepting 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.  It's always over the bar.  It's like the ball and goal repel 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 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,  ...for all are kettled here, doctors, patients and audience.

The Devil laughs his ass off! This is the entertainment of kings and lords and caesars!  This is true victory.  This is the ultimate XP grinder farm.

And. 

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

And from the touchline you slowly look from left to right.  You see the impossibility and the futility of scoring any points, for they are points scored against yourself.  Doctors and patients are one, they should be united against the disease, not pitted against each other.

You start to see their 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.

The Devil sits bold upright. You have his attention.

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 strangely, 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, his mouth opens and his cigar falls into his lap.

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.