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 pressurenot 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?
M.E needs a fair and balanced approach. Bias and conflict keep people with M.E ill. 2,500 words on my full recovery after 35 years of M.E here: Complete Breakdown.
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 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."
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.
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!
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, ⏳ & 🔋.
I grew up with M.E. I got an offer for medical school with M.E. I courted my wife with M.E. I became a father with M.E. I performed tens of thousands of hours of advocacy work with M.E. I stood up to bullying with M.E. I faced my own death with M.E. I fought M.E and I beat M.E.
As many people know, I have for some years now received vicious personal attacks and threats from M.E patients. Abuse from M.E activists is a commonly reported problem. Researchers, community leaders, and even journalists record bullying and intimidation often sustained over many years.
The single most personally insulting message that I received however wasn't being called an idiot, or a Nazi, or an assh-ole. It wasn't part of the orchestrated social shun that left me alone with severe M.E all over again. It was when an M.E patient came to me and simply said: "Who's paying you?".
Since the 1990s I have contributed over 32,000 hours of work to the M.E patient community. Unlike some, I have received no payment whatsoever for my work. I have done what I have done out of love, care and sympathy. I saw a desperate need and I tried my best to meet it even though I was, myself, very ill. I act out of service and, more recently, because I feel a duty of care.
The piercing spite, the rowdy clatter and the bruising wilfully ignorant cruelty evident right across M.E patient activism is simply that which makes it more difficult to help. M.E patients are, increasingly, allied to their illness. Perversely, they fight to be left isolated, ignored, and disregarded. That they are not simply jettisoned suggests the presence here of a stronger force than mere money.
When I was a patient advocate there was this study called "The Pace Trial." It seems like a million years ago when we were all talking about it, though it's just a decade. It all seemed very important at the time. Anyway; during the process, as an exercise, I reduced my thinking about this study to just six words.
Later, as my advocacy work ended and I started to work in earnest on a new way of treating my M.E, in another idle moment I again tried to reduce my thoughts, (in this case about recovery), down to as few words as possible. I came up with the following phrase:
"Exploit variations".
Now, when you know what the treatment idea is, it's not a bad reduction, but when you don't... Well the phrase just seems meaningless! And, as a teaching tool, it's very, very, bad at explaining how I beat M.E to other patients!! So, I thought I'd, allow myself some extra leeway and try to share the way I beat M.E in one tweet...
I'm still quite happy with this and the tweet has been viewed thousands and thousands and thousands of times, which is great!!
As you might expect, there's an awful lot going on in those 280 characters. I'm clearly going to have to present the treatment idea as a movie or animation at some point, but for now here's some additional notes to help people with M.E (and their physicians) understand the thinking behind what was, on the face of it, quite a bold message:
"Ok. If you want to get better from M.E, first rest & accept its seriousness, then de-stress & pace, then nudge or medicate your circadian rhythm back to normality, then challenge limiting illness beliefs, gradually increase exercise levels & when fully recovered go to the gym"
>Ok. This is me saying that I've listened long enough and that it's time for me to talk now.
>If you want to get better from M.E At the outset we have a strong suggestion that recovery may be both possible and under patient control. This is highly controversial. The tweet, however, is about my recovery. It's me explaining to myself how to climb my way out of the slippery well of Myalgic Encephalomyelitis. It's what I'd share with my 12 year old self. And, to be clear, the very first thing I would tell myself at that age is that the symptoms of M.E are reversible.
>first rest We start out with validation of the primary patient response to M.E and the "Return to baseline" starting point of CBT/GET. M.E symptoms are terrible and steps must immediately be taken to reduce them (in so far as this is possible).
We immediately run into a major problem: Inactivity is deeply damaging to health over the long-term. The human body needs exercise in order to maintain physical and mental health. Rest, therefore, can only be prescribed as one element of an overall recovery process. This is what the tweet as a whole defines: a possible route out of M.E.
>accept Here, in one word, we have strong validation of M.E patients' illness-beliefs. We understand that later on these beliefs may have to change, but at this point, we take as a given that patients are a) telling the truth about their illness and are b) experiencing awful and thoroughly debilitating symptoms: symptoms that they are going to have to learn to live with - for a time. At this stage, the opposite response, fighting M.E, appears to be ill-advised.
>its seriousness It is vital for patients, carers, physicians and the wider society to recognise that we are dealing with a serious, quality of life-destroying, chronic illness. We do this both to validate patient reports and to provide a strong warning of the perils of attempting to brush off M.E as nothing. Out of the thousands of emails I received from M.E patients, failure to recognise the seriousness of their situation at the outset was a common theme and lament.
>then de-stress Here we have recognition that patients will have to make substantial changes to both their inner life and outer lifestyle to compensate for their current situation. M.E has been linked with burnout for very good reason. In fact, M.E patients may be burning out repeatedly on a cycle, a loop. Stress, either as tension within the body, or as unreasonable external demands, will effectively prevent recovery and even deepen the overall malaise and illness duration. Social support and welfare must be given freely and in a manner that does not increase an M.E patient's levels of anxiety and stress. Inconsiderate or non-delivery of necessary welfare support can perpetuate the illness.
>& pace, This casual mention is absolute, clear, validation of M.E patients' primary coping strategy: Pacing. Its methodology is not described as it is widely available. While we respect Pacing, by placing it within a treatment sequence, we also suggest that there are limits to the improvements that this strategy can engender. Pacing is only a step on the way out of M.E. This is in line with patient reports that pacing works up to a point and no further.
>then nudge or medicate Here we recognise the parity between behavioural and biomedical interpretations and interventions in M.E. We disregard the widespread ideological warfare over the topic as distracting and unhelpful.
>your circadian rhythm Here we present a key change. For me, this was a change to the orchestration of my day and the energy budget that supports it. I call it Activity shaping. I've discussed this process at length on Twitter. The idea itself is somewhere between Sleep Hygiene (from medicine) and energy budgeting (from patients). Crucially, nap-removal, crash removal, and the consolidation of periods of exertion and periods of rest is achieved through timeshifting as opposed to "pushing through".
The diagram below demonstrates a gradual increase activity levels over a 24 period when a patient PUSHES forward (with corresponding increase in rest and sleep). *Not recommended at this stage*
In contrast the following diagram shows how a patient may gradually shift the timing of daily exertions and rest.
Timeshifting gives physicians an objective way to determine and measure treatment progress while satisfying M.E patients' demands for a potentially restorative treatment that does not require an increase to their overall level of exertion
>back to normality It is vital, I think, to present a reasonable ultimate aim in treatment as opposed to an unrealistic extreme where either activity or rest "wins" as the correct way to deal with M.E. Normality here is the smooth alternation between rest and exertion enjoyed by the general (healthy) population and this must, I think, be the aim for every M.E patient. An M.E patient's highly variable energy budget with low level function punctuated by severe, often painful, crashes is torturous.
In addition to a highly aversive symptom-set, Post Exertional Malaise increases the likelihood of further episodes of Post Exertional Malaise. In M.E fatigability is more of a problem than fatigue and this is the reason why patients can perceive their condition to be a permanent, progressive and degenerative downward spiral. The light at the end of the tunnel finally appears when patients realise that M.E symptoms can be reversed. Brain fog is not necessarily brain damage, muscles can be rebuilt and working and social lives regained.
M.E patients report a low function, highly variable, energy budget with symptom worsening after "pushing though". All patients agree that managing and living with their condition is extremely hard and that they regularly fail in their attempts to avoid "crash". This may, as many patients believe, be the result of a virus, or it could be another ongoing problem such as sleep apnoea or environmental neurotoxic exposure, but it doesn't have to be.
The traditional patient description of M.E is that of feeling like a phone battery that won't hold its charge. In electronics this is called a memory effect. It is a property of certain types of battery whereby overall function becomes dependent on how and when the battery has previously been charged and discharged.
In a similar way, once fractured, a patient's energy budget itself could become both the cause and the effect of long term, chronic, malaise, i.e. a self-sustaining loop could be formed:
Any failure to manage M.E leads to further fractures to the activity cycle/energy budget, which then create further difficulties in management ...and so on.
In M.E, a memory effect within the body may mean that how well you spend today's energy budget may affect how well you are able to live tomorrow.
The difference between a healthy person's output and an M.E patients' activity is startlingly clear, and should provide all the evidence a physician or welfare officer needs in order to provide robust sympathy, care and support.
The key part of the process of recovery, for me, was the restoration of a normal activity curve. In the absence of external demands this a can be an inverted pattern, just so long as all the inactivity is in one part of the 24 hours and all of the exertion is at the opposing point in the cycle. Sleep inversion can be corrected at the end of the restoration process, again, by simple timeshifting (and this achieved via behaviour change, or medication).
If a patient's activity curve cannot be corrected or returns to a broken state, I would then consider a looking for an ongoing problem (such as sleep apnoea).
>then This simple, singular, word recognises that something important has changed in the previous step (which was in my case, Activity Shaping). Up is now down, and down is now up. We have to re-orient ourselves and, to finally escape M.E, we have to realise the rules have now changed!
Time to rock the ship!
>challenge limiting illness beliefs, Here we have full validation for medicine's application of CBT challenge to illness beliefs, while placing it at the correct point in our prescribed route out of M.E. At this stage we recognise, and without judgement accept, that M.E has turned us into "couch potatoes" conditioned (by perhaps years of illness) to believe that exercise will always produce harm. If, however, the correction to our activity cycle has been effective, harm should not now occur. In fact, the normal beneficial response to exercise should have returned, (even if this return has gone unnoticed). At such a time, illness-beliefs, once so protective, now become the only things that are limiting a patient's function. Challenge and self-challenge are required.
>gradually increase exercise levels Here we have open validation of the medical treatment strategy, "GET, Graded Exercise Therapy" as something that every single M.E patient will have to do in order to escape the effects of M.E. "The Pace Trial" mentioned above has an extremely good description of GET and CBT(GET) within its Notes for Therapists. GET is greatly preferable to unstructured increases in exercise, especially when setting off on the road to recovery.
I think the reason that some M.E patients report difficulty with GET is that it is applied before the patient's activity cycle/energy budget has been normalised. This can end up exacerbating the pre-existing sharp changes in the cycle. This worsens symptoms and makes the energy budget more difficult to manage, increasing the likelihood of further fracture.
When GET is applied to a healthy daily activity cycle/energy budget, the expected gains in fitness arrive without PEM and the patient is free to escape M.E.
Traditionally the primary symptom of M.E reported by patients is called PEM, Post Exertional Malaise. There has, however, been considerable resistance to this idea from medicine due to the well-accepted health benefits of activity. Doctors are more likely to believe that malaise follows inactivity.
Conflict over the key symptom in M.E has created a strong pressure on the doctor-patient relationship in M.E over many decades. One way to resolve it is to accept that both perspectives have merit. This takes the conflict away from the doctor's office or Twitter.com and places it firmly where it belongs: within the definition of the disease itself.
The idea here is that worsening follows both activity and inactivity and this defines the impossible paradox, the trap, the bind, at the heart of M.E:
In terms of exercise, patients are damned if they do and damned if they don't.
Likewise; physicians cannot possibly recommend decades of rest, it would be malpractice to do so, but, of course, they cannot convince patients to ignore what they feel is their primary problem, namely that exercise hurts them and makes them ill.
In the formulation described on this blog, M.E symptoms represent any deviation from a normal activity curve. Both under- and over- exertion are treated as equally undesirable. In addition, due to the postulated memory effect, both may have an detrimental effect on the body's future energy supply.
Patients' and doctors' views of M.E are both equally validated and they are directed to attack their common enemy, M.E, together.
>& when fully recovered The suggestion here is that recovery may be 100%. This was the case for me. Recovery, after 35 years of illness, is as wonderful as you would expect. The only trouble here is that many M.E patients, especially the chronically ill often do not expect to recover. This view, often emphasised by activists, has the effect of disempowering M.E patients further. What is the point in trying anything new if recovery from M.E is impossible?
At this point in time M.E patient activism's extreme bias tends to lead activists to unwittingly become allied to the illness itself. In contrast to this, I found that behaviour and attitude matter. I think you are unlikely to find recovery if you are not looking for it. I think that warfare between doctors and patients keeps both from curing M.E.
For my part, my own recovery has enabled me to go out and to fall off things like never before.
>go to the gym It is ironic. We end up exactly where so many of us began. And at this point seemingly wild and hostile medical advice to exercise in response to an absence of illness becomes entirely correct. Isn't that a thing? Every doctor, every patient, every psychiatrist, every advocate had a piece of the puzzle of M.E. At least that's what I found.
"Ok. If you want to get better from M.E, first rest & accept its seriousness, then de-stress
& pace, then nudge or medicate your circadian rhythm back to
normality, then challenge limiting illness beliefs, gradually increase
exercise levels & when fully recovered go to the gym"
As a whole, my tweet defines a procedure, a method, a route, a ladder, an ordered list. The presumption therefore is that if patients were to disregard or to attempt to follow these steps in a different order, things would not go as well for them, as they did for me.
Anyhow, that's the route I took. Your mileage may vary.
This blog is not medical advice. I am not a doctor.
Everyone is going to have to rest to begin with and everyone is going to have to exercise at the end. Everyone has to accept that M.E is a serious life-threatening condition early on and everyone has to challenge limiting illness beliefs as they close in on recovery. There is no war here in M.E only endless, purposeless, delay.
All patients and doctors involved in M.E must power though their differences and learn to work together.
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.
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.
For many years I have been targetted for abuse, threats and harassment by well-known and well-supported M.E patients and activists. I have put up with these in order to share details of my wonderful recovery with all M.E patients.
In recent days I have been publicly likened to a Nazi and I have decided that enough is enough, and that I will to cease work on this 'blog. I will shortly remove all M.E content from it.
Despite the release of the bizarre and highly political Draft NICE Guidelines this month, CBT challenge to illness beliefs and Graded Exercise remain key parts of how I would treat my own M.E if could go back in time to save my health.
"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"
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.
🔹 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.
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.
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)
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.
