Featured Post

Can M.E activism be stopped?

Scrolling through what must have been 50-100 messages sent to a researcher in a 24 hour period was depressing.  The first thing that leaps out is the personal abuse.  M.E activists' target individuals for personal attacks and these attacks can be sustained over years and even across decades.  The next thing I see is the ignorance.  Ignorance is a huge part of M.E activism.  Individuals are often left to defend themselves from words and ideas that are not their own but have, instead, been projected onto them or conjured out of nothing. Finally; I notice names, people I used to know when I was a patient advocate.  People who I know to have mislead the M.E community.  People whose behaviour was a big part of the reason why I had to get myself far, far, away from M.E patient advocacy.

Researchers allied to activism have publicly encouraged personal attacks on rival researchers in the field.  

So, science is taking a beating here too.  There's all kinds of lofty talk about "citizen-scientists" in M.E but when it comes down to it the science of M.E activism isn't built on the fair test:  M.E activists wail about the "Pace trial" but the single worst bit of science I have ever seen in M.E came out of Stanford University.

ME Activists' ignorance is self-sustaining.

As activists shout and attack and abuse and harm others, so they protect themselves from hearing *and being changed by* genuine, truthful, information.  They are called "sick and crazy" by their own side, but I think they cannot bear to process exactly what this means.  I guess if they shout loud enough and harm others enough then they don't ever have to try.

M.E Activism is directed and steered by selective information, misinformation and out right lies.

I wonder how many patients, in their right minds, would support M.E charities who deliberately choose to leave M.E patients to be bullied and threatened?  I wonder how many patients would pile on to researchers if they actually bothered to meet them and bothered to understand their work?  I wonder how many M.E patients would turn up outside their health department, if they knew that a founder of M.E Action thought that vicious personal attacks from M.E patients were the problem, not the NIH etc?

Can M.E activism be stopped?

M.E patient activists' personal abuse is tolerated and even rubber stamped by allied academics.  M.E activists will not listen to reason nor process factual information. M.E activism is dishonestly steered.

No.  I do not believe M.E activism can be stopped.  M.E activism could only have been brought to an end had M.E patients themselves rejected it. 

M.E activism humiliates every last second of M.E patients' suffering.  M.E activism reduces M.E patients' experience down to name-calling and bullying.  M.E activism isolates and contains threats to itself, even where these are, in reality, individual M.E patients.  Patients should have rejected these clear transgressions but instead many, too many, have embraced them.

10,000 M.E patients signed up to personally attack a physician.

There is nothing much more to add to add to this terrible fact.  In so far as we can trust the figure; 10,000 M.E patients appear to be fully signed up and supportive of the idea that it is okay to target researchers and to trash the free discussion that underpins science.  Indeed the activist who likened the same researcher to a Nazi torturer was made "Activist of the Month". 

Leading M.E activists are immoveable and tight.  On the receiving end of their attacks it feels like a production line:  One may take the role of abuser, another the role of "concern" and then still another takes on the task of suppressing the fact of abuse so that the wider world doesn't find out.

So.  What to do?

I have received bullying, abuse, and threats from M.E patient activists.  In the short and the long term it has damaged my health and my mental health.  Of course it has!  It was designed to harm me greatly.  It was designed to push me away from the truth: truth that I needed to hear in order to recover.  It is clear that the strategy and aims of M.E activism are put above individual M.E patients' and researchers' welfare and put above the factual evidence.

In M.E activism, The Cause is put before its effect.

Only when you see M.E activists stripping M.E patients of their health, their social support, and their diagnosis do you realise that the evil here isn't quite what you imagined it to be.  This is the kind of behaviour that could easily keep the "millions missing" ill indefinitely and it comes from activism not from medicine.

At this point in time, while M.E patients remain heavily exposed to M.E activism, I don't believe they can, in large numbers, recover.  Recovery is being blocked.  Ignorance, threats, disinformation, these things pervert behaviour and set the disease in stone.

This said; I do think the only way to liberate M.E patients from activism is to cure M.E.

Treatment and cure is unlikely to arise from activism or researchers allied to activism for the simple reason that bullying and abuse are hostile to scientific endeavour.  They pervert the method, skew the data, cloud judgement and throttle communication.

It is likely that good treatment for M.E will be founded upon a broad understanding of the illness and, over time, as M.E patients see their friends recovering health and function we can only hope that activism will lose its appeal.

In all cases, the eventual cure for M.E will forever be associated with a community that attacked and harmed individuals who were trying their level best to help them.