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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.