So far, I've been running over old ground. The work we're currently reviewing gained a total of 1.1 million views when it was first published, but has now mostly been superseded.
The next step along the way towards a new treatment for M.E is to try to understand exactly why the most appropriate response to M.E might change over time and over the course of the disease. This is the work that I want to be able to share on this blog and the work that I suspect will have the greatest potential to directly help M.E patients regain their function and quality of life.
There is, I'm afraid, a lot more groundwork to set in place before we can move on to the new stuff. Unfortunately due to threats from M.E patient activists I have had to stop and move my work to this new location. I am also unable to share and discuss my work on Twitter, my preferred communication medium. Finally, due to the actions of M.E community leaders, charities, organisations and allied researchers, I am no longer able to communicate with M.E patients directly.
You can understand that this sorry state of affairs is slowing things up.
A leading M.E activist once told me on the telephone that he could not understand why so many patients drift away from charity and activism work. Having looked into the matter in some depth I have an answer, one that I shared just today:
"The M.E community has broad problems with abuse, dishonesty and deeply entrenched views."
I do not want Long Covid patients to be exposed to the sheer bloody mindedness and cold heartedness of the "business" of M.E activism and I know, many M.E patients are sick of it too
One patient sticks in my mind. Her health was starting to improve (she was finding a way to both exercise and rest... huh.). But she told me, privately, that she could not discuss it. She said she felt suffocated by the M.E patient community. As things stand, you cannot both find support and recovery within the M.E patient community. It appears that you have to choose between one or the other.
As a patient; I experienced a huge boost in function during my 30s. There was a point where I started to dare to believe that I was getting better. So, I went out and I tested it out. I performed a series of runs across Wanstead Park in East London. It turned out that I wasn't quite over M.E, but you know, I could have been, it was quite possible. A charity founder scoffed at this behaviour. It was made clear that I should stay at home or in bed. And this struck me as really odd. Patients do report recovery, but the very saddest thing in this situation would be people who had regained their physical health, but who remained imprisoned within their own beliefs.
We will see that managing false and true illness beliefs plays a huge part in responding to M.E - Perhaps even on an minute by minute basis.
In The day I beat M.E I talk about my 12 and half mile walk from my virtual prison cell in East London into central London. Of course this event did not take place all of a sudden, it was the culmination of years of effort. But still, having been ill for 35 years, it seemed very possible that I wouldn't be able to both manage the walk and avoid crippling Post Exertional Malaise afterward.
I've no doubt that the charity founder would have laughed and told me I was silly for trying such a stunt. And this why, instead of going to the M.E community I approached an author of "The Pace Trial" for encouragement, which by the grace of God, I received. The rest is history. I have never looked back, (well, if we discount the amazing retrospective that's happening here.)
The point I want to make is that had I asked the charity founder, or had I been crushed by the personal abuse I received from a patient the day before my trek, I may never have even tried. Seriously, I had M.E, I had tried and failed a bajillion times, why should this day be any different?
Now, from this perspective it is obvious that I would have lost the most wonderful and healing experience of my life. The most important thing to note, however, is that had I not tried, I would never have known what my body was capable of. The loss would have been hidden from me.
This is a key point within the management of M.E:
Losses due to over-exertion are in your face, they are horrible, prolonged, symptoms.
Losses due to under-exertion are silent. They go unnoticed.
If only M.E patients realised just how much of their lives they were losing to rest, they might take a different tack when it comes to research and activism.
Balance is key within the management of M.E. Balance is key to recovery. Balance is key to fair and free discussion.
Extremism, abuse, threats, dogma, blame, hate: these are the actions of patients who do not seek fair treatment. These are the actions of patients who want to proven right more than they want to be well.
