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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