Guest Editorial: A Radical Care Pathway for ME/CFS

This is, IMO, so, but it is highly profitable pseudoscientific crap, and thus has value, this should not be forgotten.

Fair enough it has no value to us, but to others it does, and some of them have influence, money, prestige and power - in the terms of the society we live in, their opinions matter much more than ours.

The bottom line in evaluating something isn't success, it's not how many people it helps, it's perception, money and power. It shouldn't be, but it is.

Pseudoscientific crap, definitely, but still much more dangerous than it's "worthlessness" would suggest.

 

Just occured to me that Bandler wasn't the first psychotherapist on cocaine to found a belief system and wreak havoc on the world. What is it with these people?

 

http://occupyme.net/2017/11/25/for-serious/#comments

I came across Nancy Blake again when she responded to Jenny Spotila's blog last week.

She's obviously still very involved in the ME scene, but apart from the book with Leslie Simpson, I haven't come across her.

In her discussion she posts links to 2 articles she has written, probably the ones posted here yesterday.

Surprised that we weren't more aware of her since she seems very involved in ME/cfs work.

 

the flow of informational substances?!

People do change. She may stick with the alternative medicine sites out of habit.

 

Fascinating - and disturbing - to see how I am discussed here- so want to weigh in with an update!

I am indebted to Sandra Goodman, Owner and editor of Positive Health, now an e-journal. However you may regard alternative/complementary medicine, she has provided me with a forum for publishing my articles, and as an advocate dealing with complicated issues it is very useful to be able to provide a link to a published article.

As I have a degree in Psychology/Philosophy, and further qualifications as a Social Worker and as a psychotherapist, it would be difficult to find another publication that would have allowed me to publish, and especially to shift my focus entirely from NLP to ME/CFS.

Before I retired from the UKCP (UK Council for Psychotherapy), I tried to get them to publish an article in ‘The Psychotherapist’ about the damage created by trying to treat ME/CFS with psychotherapy but they didn’t even answer my letter. I’m not a doctor or scientific researcher, so no chance to publish in academic or medical journals.

Sandra completely supports the views of the majority of us: that people with ME/CFS are appallingly mistreated by the UK psychiatric mafia who continue to maintain control over the medical, political and public perceptions of this disease under the BPS model. Her support means that I continue to be able to write and publish.

NLP gets a bad press - Bandler was a very mixed bag. However, for people with mental health problems, NLP can cut through a lot of the nonsense propounded by many schools of psychotherapy (and psychoanalysis) and mental/emotional suffering can often be alleviated very quickly. Its effectiveness makes it particularly dangerous when misapplied.

The most seriously abusive use of NLP that I know of is Phil Parker’s ‘Lightning Process’, which can do all the damage of CBT/GET in two days. You would not be able to print what I think of Parker and Esther Crawley and their irresponsible infliction of damage on sick children, although I suppose the word ‘evil’ is printable.

Les Simpson and the “shape populations of the erythrocytes’. He was a Ph.D. in haemorheology..the physical properties of red blood cells. The most usual shape is a biconcave discocyte (flat, round, with a dimple on both surfaces). This shape allows the 15mm wide cell to ‘deform’ enough to get through the 5mm wide capillaries which carry them to individual cells, where their function is to provide oxygen and carry away waste products (lactates). These cells are very responsive to any changes in their environment, and in a number of conditions, the red blood cell population begins to contain large numbers of cells in irregular shapes...ragged edges, cup shapes...Les identified six variations...and these are unable to ‘deform’ enough to get through the capillaries, with the result that cells become deprived of oxygen, and have a buildup of lactates. Areas particularly sensitive to this situation are muscle cells, cognitive areas of the brain, and the glands which regulate body rhythms and temperature.

We know that in ME, the aerobic muscle metabolism doesn’t work well, and our muscles quicly revert to the anaerobic metabolism, a shift usually only associated with extreme levels of exertion. But our muscles fail quiclkly, and when we continue to exert ourselves, we experience delayed recovery and the potential for permanent incapacity. And we experience decline in cognitive function, and disruption of normal regulatory mechanisms.

Maryann Spurgin has written extensively about this, and now apparently, Ron Davis has taken an interest in this aspect of ME/CFS.

Les noted that the normal treatment of blood samples before micrography was to wash them in saline and leave them for 30 minutes, but that during this process, the cells would revert to the biconcave discocyte shape, and the shape changes could no longer be observed. He therefore treated his samples in the same way that samples taken for immediate analysis during surgery are treated - they are ‘immediately fixed’ by being dropped in a solution that holds the shapes. Some research which claims to invalidate his observations has not followed this procedure.

Back to my early Positive Health articles...I certainly have advanced in my understanding of ME/CFS since I wrote in 2002. But even then I was perfectly clear that no form of psychotherapy was relevant to ‘curing’ ME/CFS, and my greatest fear, right from the beginning, was that some psychiatrist would come along and demand that I run up and down the garden.

In fact, my main aim in life has been, and continues to be to protect people with this disease from that fate.

My latest article, attacking the Lightning Process, explains in more detail. In it, I offer some bits of the NLP model and explain how you can try them out for yourself and come to your own conclusions about whether it makes any sense or not.

http://www.positivehealth.com/artic...nd-the-lightning-process-in-the-looking-glass

But as far as ME/CFS is concerned, what any psychotherapy should offer is a way to let go of the idea that exercise is useful, and allow yourself to take the rest that Ramsay and Acheson said were essential to any possibility of recovery.

I believe that we have a virus which is similar to the polio virus, which remains in our system, which continues to be stimulated by exertion, and keeps our immune system on red alert (or else incapacitated). After 32 years of illness, I get markedly better when I have been in bed for a few days, and when I do a bit too much, I get a sore throat....immune system activated. I think this matches with the experiences of many of us.

Our immune system needs enormous amounts of energy to function, hence ‘sickness behaviour’...and that apparently before the psychiatrists came along, patients who were prescribed complete rest did in many cases make a complete recovery...unlike the present time. Contrary to the Wessely lot, we need all the ‘sickness behaviour’ we can manage...it’s our immune system that has to do the fighting.

http://www.positivehealth.com/artic...-polio-connection-and-the-dangers-of-exercise

Hope this answers a few of the questions readers have raised! Thank you so much for giving so much thought to what I have said. My original Guest Editorial is no longer available via the original link but was republished in Positive Health:

http://www.positivehealth.com/article/cfs-me/a-radical-care-pathway-for-me-cfs

And finally, the biggest danger to us, and to any woman with a health problem that is exclusively or predominantly a ‘female complaint’ is the ‘medically unexplained sypmtoms’ diagnosis which if applied because our doctor isn’t competent or willing to explore our specific medical disorders, can actively prevent further diagnostic efforts, leaving us still ill, with diseases that could be life-threatening.

 

Thanks! I’ve got so much respect for this forum and am grateful to be able to contribute.....