Deletion.

Due to intense long-term bullying from the M.E patient community I have decided to remove this website.

*TRIGGER WARNING*

Seriously. M.E community threats, abuse and social shun had created within me, 20-30 thoughts of suicide per day. I think this was an understandable reaction on my part.  I was being ruthlessly bullied by a community that will not draw the line at harming researchers and fellow patients.

 

On the wider issue of recovery, I think many people with M.E may find it helpful to gradually consolidate periods of rest and exercise using timeshifting. But, above all else, M.E patients who want to follow my route to recovery must ask themselves some soul-searching questions:

What did I go and do that almost all other people with M.E do not? What changes occurred to me as a direct result of my choice? Why do I send out the same simple message every day over at @ahelluvabird? Why must M.E patients treat me as if I don't exist? What did I do to compensate for this ongoing, hellish, often community-wide pressure not to be? (Hint: I'm doing it here:)

 

I was taught it's important to always go out on a gag so here we go...

How many M.E patients does it take to change a lifebulb?

N=1.

Good-bye. Good luck, and... Geronimo!

The treatment for my M.E has been an absolute farce.

In my teens, doctors decided the best treatment for the illness that was to destroy much of my life was to call me a liar.

 

 

After M.E consumed my career in medicine, physicians decided that the best treatment for my illness was exercise and the best way to enforce this was to remove my access to welfare and food.

 

For 25 years, close family told me how sorry they were to see me so ill but then, in a deadly volte-face, they revealed they'd never believed I was ill at all.

 

 

 

 

 M.E patients, activists, charities and their allies in academia thought that the best treatment for my M.E would be to send me sustained personal abuse over years, refuse to listen to reports of harm, and to cap it all off with threats.

 

 

 

The treatment I received for M.E was a farce. In the end, it was quicker for me to sit down and try to cure my own disease.

 

 

In the last 12 months I have walked 2,600 miles, with no PEM. I have shared my recovery. I've stood up to doctors, family & activists. As the saying goes...

𝘛𝘩𝘦 𝘣𝘦𝘴𝘵 𝘧𝘰𝘳𝘮 𝘰𝘧 𝘳𝘦𝘷𝘦𝘯𝘨𝘦 𝘪𝘴 𝘵𝘰 𝘨𝘰 𝘰𝘶𝘵 𝘢𝘯𝘥 𝘭𝘪𝘷𝘦 𝘺𝘰𝘶𝘳 𝘭𝘪𝘧𝘦 𝘸𝘦𝘭𝘭.

 

Post Script.

The story had a happy ending, but the process required dedication, willpower and the ability to address my personal bias and to fundamentally change both my behaviour and my environment.

Reader, I told my doctors I wasn't lying. I chose no food rather than bad treatment. I chose no family over abusive relationships. I deleted my public work to permanently sever my association with patient advocacy. And while I stood up to five years of community-wide DARVO assault, I redefined my M.E and I got well.

More information on my recovery from M.E here in "Complete breakdown". Short film in the pipeline.

Post, Post Script.

I didn't achieve this feat alone. I didn't recover on my own. I received help, support and care from a handful of physicians, close family and M.E patients who'd become my friends.

As The Doctor says, "If it's time to go, remember what you're leaving. Remember the best. My friends have always been the best of me."

Too Long Didn't Read:

After I stood up against M.E activism's abuse of researchers and patients, I learned how to exercise without PEM and recovered from 35 years of M.E. 😉

In summary.

I had M.E between 1984-2019. While I was a M.E patient advocate (1997-2017) thousands of people with M.E (PWME) wrote to me and I contributed tens of thousands of hours of work.

I left M.E advocacy because my fellow community leaders would not publicly address M.E activists' abuse of doctors and patients.

Since 2018 I have developed a theory of M.E that attempts to alloy pacing and graded exercise.

While working, I have published over 1,000 videos standing against the abusive behaviour now mainstream in M.E activism.

I have concluded that conflict in M.E is self-defeating.

I have been the target for ruthless public and private abuse from M.E patients and activists for many years.

Refusal of M.E community leaders and charities to help in combination with a vicious community wide shun has, in the past, led me to question whether I should end myself.

The M.E community aggressively blocks discussion of exercise, recovery and M.E activists' abuse.

I do not believe good science and research can be done under such circumstances.

In M.E every single researcher is but one unwelcome conclusion away from (literally) a lifetime of vicious personal attacks.

I have therefore decided to complete my work for people with M.E far away from the M.E patient community.

You, reader, can help me every day by retweeting my message against abuse on @ahelluvabird.

I will try to send you all some photographs from my wonderful recovery and marathon attempt here on @batteredoldbook.

Allons-y!

 

I've reached a hard limit. My intention therefore is to complete my recovery (and my movie about recovery) away from the endless hatred and gleeful cruelty of the M.E patient community. My course is now set. I will recover and one day I shall come back, yes, to tell you exactly how I did it. Allons-y!

The end of an error.

Am so sorry, I was giving it a go, but I think I can't go on like this. The abuse from M.E patients is killing me.

 

 

 

 

 

But these communities are not worth one drop of my blood. 

Thank you for showing me this Vanessa. You are The Doctor.

 

 

To all those patients and physicians so strangled by M.E activists' abuse and mistreatment:

Do not allow your light to be snuffed out by others.

Instead, burn with ever greater intensity, vigour and life.

Best wishes

James/.
@batteredoldbook

The future.

What I'm currently saying via Twitter Direct Message:

"Anyway, I have concluded that it is time to step back from the fray. I do not see progress in M.E for quite some time. I think medicine and patients will continue to fight, and that's a shame, but it's also a choice."

Moving forward my role is quite simple. I've to continue to urge people with M.E  to end M.E activists' vicious, horrible, abuse of patients (as "sick and crazy") and of doctors (as "Nazi garbage").

Until the abuse issue is sorted, science and research in M.E will be thoroughly unsafe and hobbled by extreme political bias.  Until the abuse issue is resolved, M.E patients will self-stigmatize, lower awareness and harm everyone.

My stand against abuse in M.E activism will always, by necessity, be a small part of my life and that's okay. It really is.

Secondly, I should work to flesh out the bare bones of the route out of M.E I've already started to put forward.

In the end, when all is said and done, I survived medicine removing my food and I survived M.E activists removing my social support network, in fact, I've come out of this awful time both recovered from severe M.E and a stronger person.

I've often described M.E as a series of betrayals.

Betrayal by medicine, by family, by society, by activists and betrayal by my own body.

But you know, looking back, I can see each of these events in a new light, for each was a time when I personally overcame my own expectations and bias.

And this is what science is all about. It's not about re-enforcing dogma and preconceptions. It's about creating a context where discovery can occur and then allowing positive change to take place.

I never thought I'd get better. I'm very glad to find that I was wrong.

Anyhow, until we next speak, I wish you all, ⏳ & 🔋.

James/.

@batteredoldbook

Recovery

Do you have any idea how bright and clear and bracing it is up in the mountains of Wales?

I hope every M.E patient rejects the abuse of doctors and patients, and is then free and able to find their way to join me. Good luck!

Yay!

Best to contact me via Twitter.

Hello to you.

Winning the day.

 
The whole business with Professor Garner's recovery story has really helped me.  As previously recorded, patients had moved on from threats and character abuse and started calling me a Nazi, (like they do many others who try to help #MEcfs patients). I was ready to accept that people with M.E were unsavable.

Part of recovery after 35yrs is enjoying it, but the M.E community were making one of the most brilliant experiences of my entire life, dark, depressing and awful.

But when I looked at the M.E community's responses to Prof Garner's recovery story I was taken aback.

M.E activists' anger was trivial, uninformed and arrogant. It was entitled, it was dogmatic, it was ridiculous.

But fundamentally, it was shallow.


Clang! Clang! Clang! We're victims!

Clang! Clang! Clang! Doctors are gaslighting us!

Clang! Clang! Clang! We're mistreated!


And you just say: Well, if that's true, how come the head of this charity or that action group privately says the exact opposite?

And the anger flees. It runs away. It is founded on pure ignorance.


DO NO HARM

What's that M.E patients? You don't like being mistreated? You don't like being disbelieved? You don't like being demonised or targeted as crazy? You don't like neglect?

Well, all of these things are done in public by M.E activists to M.E patients.

But not a peep out of them all then!!

And that's an education.

Selective anger, selective offence, selective rage?

No. No. No.


If this community were angry about mistreatment it would be angry about *all* mistreatment.

In reality, M.E community wrath is used to push a political agenda.

As the charity founder told me:

"It's business, James".

And when you call it out, like all bullying, eventually, it runs away. And when it does, we can start once again to seriously talk about how to cure #MEcfs patients. And happily I have a load of work on just that subject.

In your own time.

And while we wait for the M.E patient community to address the vicious abuse that its own leaders already acknowledge in private, I'm going to do my very best to live a great life, to enjoy my recovery and to dot the "i"s and cross the "t"s on my life's work of service for all people with M.E.

Basically I'm back. Thanks Professor.

Update.

Quick update.

"As you many have read elsewhere, I am waiting for the outcome of the U.S 2020 election before deciding how I will continue here and on Twitter. (@batteredoldbook, @ahelluvabird)"

In the end  I decided not to wait for the election results. I was inspired to see so many people standing up to bullying behaviour in the US that I decided that in either eventuality it was better to stand up for what's right and good and honest and proper.  I wrote:

"Biden inspires. In my own little world, I will renew my struggle to reunite doctors and patients against the disease M.E. I will continue my rejection of abuse, bias and the toxic politics of revenge. And I will try my very best to help find good treatment for all #pwme. #mecfs"

Specifically; I chose to keep @batteredoldbook as my personal account and to use @ahelluvabird, for my work on M.E. 

Standing up and making my own choice rather than waiting for others felt good and very soon after Mr Trump lost power. I don't think the two events are connected. Lol. 

They sure resonate though!

I will periodically transfer the content I've developed on Twitter to here.

Best wishes,

James/.

@batteredoldbook

Looking back.

My M.E CV

🔹 I stood against the abuse of patients & doctors.
🔹 I constructed a new treatment model for M.E.
🔹 I supported 1000s of M.E patients.
🔹 I recovered my health to the point I can walk 12 miles a day.
🔹 I played a key role in the challenge to Pace and its reversal.
🔹 I represented people with M.E in discussions with medicine.

It is only fair to also list the things I messed up on:

🔹 I failed to convince people with M.E to reject abuse.
🔹 I felt I had to publicly apologise for my bias as an advocate.
🔹 I continued to speak with people who were being abusive to me.
🔹 I hurt my mental health being an advocate and my family/friends had to undo the damage.

🔹 For a long time, far too long, I dismissed recovery stories because they didn't fit in with my world-view. 

🔹 I consistently misjudged people: I worked to support and help people I should never have gone anywhere near and I overlooked the kindness and wisdom right in front of my face.

Still though, eh?

🔹 A new approach to the treatment of M.E.

🔹 A complete recovery.

🔹 1000+ videos against M.E activists' abuse.

🔹 Being there for thousands & thousands of lonely, suffering, patients and for any physician attacked.

Yeah. I'll take that.  😎

Grateful thanks.

I have now published well over one thousand videos.

 

With grateful thanks to my wife and children and to all those who publicly and privately support me during my unyielding and unending stand against ruthless personal abuse in M.E patient activism. 

 

People with M.E should not be abusive to doctors or to patients.

Update.

As you many have read elsewhere, I am waiting for the outcome of the U.S 2020 election before deciding how I will continue here and on Twitter. (@batteredoldbook, @ahelluvabird)

Best wishes.

James/.

Current best guess as to how to escape M.E.

 

Do you see how it works?  Instead of getting bogged down fighting an endless ideological war, we validate both approaches and glue them together with a single new idea.

 

 

Activity shaping, the idea that a healthy activity/sleep cycle can be slowly reconstructed through time-shifting active and inactive periods, satisfies physicians' demand for progression in treatment while also satisfying patients' demand that they should not be forced to increase their level of exertion.

 

The model explains why patients report problems with alcohol, adrenaline, stress & sleep apnoea, for all these things serve to warp their activity cycle further. It also explains why M.E patients report symptom exacerbation following even gradual and moderate increases in exertion.

It also explains the strong association between M.E and respiratory tract infections. There's nothing quite like being unable to breathe to mince your sleep cycle.

 

Cool.

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/.

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*.