Guest Editorial: A Radical Care Pathway for ME/CFS

Woolie

Woolie

Senior Member
Interesting article on NHS Managers' network:
http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/

Some excerpts:
Immediate diagnosis by careful initial interview: If patient reports an extraordinary level of debility following a viral illness, which has persisted – has other symptoms which seem random and variable but can be understood as problems of muscle metabolism, cognitive function (short-term memory problems, difficulty in following lines of reasoning), endocrine function (disturbances of appetite, sleep rhythms, temperature regulation) and immune system activity (sore lymph glands, persistent low fever, sore throats), this whole constellation points to ME/CFS
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When the patient is ready, there should be interventions at the patient’s educational institution/place of work aimed at eliminating all avoidable exertion. Along with facilities for rest breaks and perhaps being able to do some work from home, this gives the patient the best chance of returning to their education, job, or professional activities. Which, contrary to the ‘false illness beliefs’ of some psychiatrists, is what patients are desperate to do. It needs to be respected that this illness is not one of motivation: ‘I can’t’ does not mean ‘I don’t want to’, it means that there is a physical limit to what the patient can do without serious subsequent repercussions.
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I especially like this:
The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient. No wonder there is so much hostility. It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.
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I'm becoming rather wary of Nancy Blake. I vaguely remembered reading somewhere that she was heavily into NLP (Neorolinguistic programming) which is a pretty much discredited form of psychotherapy with no clear evidence base and which is used (or possible misused) in the Lightning Process, which we all know is a very bad thing!

I've just read part of an article published by Positive Health in 2002 she wrote about 'psychoneuroimmunology' in which she says this (my bolding of the contentious bits):

''
The topic known in NLP as "logical levels" also comes into this. We experience some things as part of our environment, some as things we do, some as abilities, some as beliefs and values, and some as part of our identity, or even, at a higher level, our spiritual connectedness – our sense of our relationship to higher universal values. The lower we code things on this scale, the easier they can be to deal with.

If CFS is one thing that is going on, something that requires that I do a few things differently, it is going to be easy to let it fade out of my life. If being a CFS sufferer becomes part of my identity, I am going to have a big space to fill when it goes, and if it becomes my spiritual mission to deal with it, I could even lose a sense of my life's purpose if I 'got better'. It is useful to keep ill health coded as part of something that happens, and being fully healthy as part of our identity, our mission. ''

The article seems to be a mishmash of science and pseudoscience including stuff like:

''We also know that there are a whole range of dis-eases with which Western medicine appears to be relatively helpless: disorders such as rheumatoid arthritis, lupus erethematosis, and, some believe, CFS, in which the immune system seems to be 'confused' into attacking the body; allergies, in which the immune system responds massively to a normally harmless substance; disorders such as motor-neurone disease, in which inappropriately programmed cell death (apoptosis) gradually destroys a particular set of brain cells; cancer, in which the programmed cell death that normally protects the body from endless proliferation of certain tissues fails to take place.

These could all be described as 'misunderstandings' of the immune system, misunderstandings that Candace Pert might see as possible effects of the blocking or distortion of the flow of information substances, the flow of emotion.''

http://www.positivehealth.com/article/mind-matters/psychoneuroimmunology-and-nlp

I leave you to draw your own conclusions.
 
arewenearlythereyet said:
"Nancy Blake was a psychotherapist when she came down with ME in the spring of 1986. After having spent much time studying psychotherapy, as well as, being in personal therapy, she knew that the cause of her ME was pathophysiological, not psychological.[1]"
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That's all well and good, but we know that "clinical research should be carried out by those without the inevitable, albeit unconscious, biases caused by suffering from this condition."

At least, that is what we have been told.

Pelosi, David and Wessely letter to BMJ 7 May 1988 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545791/?page=1
 
Hadn't heard of her before reading this thread so thought I would google ...also feel a little wary. she also has her own website (mainly to sell her books it seems) with a few words about herself

"Nancy's Introduction to the Site
For those of you who know my site as one mainly concerned with my professional work as a neurolinguistic psychotherapist, I need to explain that at the moment my main concern is the current situation concerning the treatment of people who have myalgic encephalomyelitis (ME, CFS. ME/CFS, CFS/ME) in most (but not all) Western nations.

If you have ME, you are most likely to be energetic, ambitious, generally optimistic, ploughing onward through illness or minor injuries, the farthest thing from being the hypochondriac of popular media perception. You need every bit of help and encouragement you can get to give yourself a chance to get better - to feel OK that resting is the right thing to do. And there are other things which can help, too, based on Les Simpson's research and recommendations concerning shape changes in the red-blood cell population.

If you are visiting this site because you are looking for a psychotherapist or a piano teacher, or have heard about NLP (neurolinguistic programming) and would like to learn more, please look at my articles."
 
Am writing from memory but I did once have a copy of a book written by Nancy Blake and Dr Leslie Simpson. It was the same Nancy Blake. I remember her CV.

His contribution was about the properties of red blood cells in pwme: he theorised something to the effect that blood cells differed in shape and some shapes moved through the capillaries more easily than others. Some red blood cells were also more pliable than others, able to squash themselves through a narrow opening. This affected the amount of oxygen reaching the cells.

The two parts of the book were focused on different issues as I remember. I couldn't see why they had joined to write a book. Did try to talk to a haematologist once about Dr Simpson's theories but response was blank looks.
 
Binkie4 said:
Am writing from memory but I did once have a copy of a book written by Nancy Blake and Dr Leslie Simpson. It was the same Nancy Blake. I remember her CV.

His contribution was about the properties of red blood cells in pwme: he theorised something to the effect that blood cells differed in shape and some shapes moved through the capillaries more easily than others. Some red blood cells were also more pliable than others, able to squash themselves through a narrow opening. This affected the amount of oxygen reaching the cells.

The two parts of the book were focused on different issues as I remember. I couldn't see why they had joined to write a book. Did try to talk to a haematologist once about Dr Simpson's theories but response was blank looks.
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Sounds like he was conflating pernicious anaemia with ME? megoblastic red blood cells? This is sometimes the case that low B12 and or folate can cause this, but I'm sure it's more a symptom of other things going on in PWME like some thyroid issues etc.
 
@arewenearlythereyet

I don't think so. Part of his argument was something to the effect that after red blood cells had been ' fixed' for a while, they assumed certain properties which they didn't have if they were analysed immediately on drawing the blood, i.e. we were misled in concluding the properties of red blood cells by delaying analysis till after they had been 'fixed'.

I can't remember any more detail but I would have remembered anything to do with pernicious anaemia because my grandmother had it.
 
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Nancy Blake also wrote an excellent article pulling to pieces the UK plans for psychological therapy based services for MUS (medically unexplained symptoms) including ME/CFS.
http://www.positivehealth.com/artic...s-diverting-5-year-funding-from-mental-health

I have a real dilemma recommending these excellent articles by Nancy Blake when they are published in and alternative medicine website and readers researching the author stumble on all her NLP stuff which is anything but scientific.
 
Trish said:
More about Dr Leslie Simpson's research and theories about red blood cell shape, capilliaries, blood flow and ME/CFS. I have no idea whether anyone else has followed up this work.

http://www.cfidsreport.com/Articles/researchers/lessimpson.htm

Cort Johnson has also written about this:
https://www.healthrising.org/forums/threads/red-blood-cell-shape-and-function.4002/

I have no idea why Nancy Blake has picked up this particular rather obscure bit of research to recommend.
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Probably because she co-wrote a book with him.

Dr Simpson came from NZ and did some talks to local UK ME groups (in the 90's from memory). He distributed blood tubes and got blood samples then. (I met him when he came to one of the London group meetings

Lovely man and part of the group at Dunedin Uni who tried to do their best for the Tapanui flu survivors in the 80s.

It like this quote from him in 2007 to the BMJ

"None of the many spirited responses to the White et al editorial have drawn attention to the urgent need to dissect ME from the all-embracing concept of CFS."
 
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Trish said:
If being a CFS sufferer becomes part of my identity, I am going to have a big space to fill when it goes, and if it becomes my spiritual mission to deal with it, I could even lose a sense of my life's purpose if I 'got better'. It is useful to keep ill health coded as part of something that happens, and being fully healthy as part of our identity, our mission. ''
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I would like to comment on this, but before let me say this: I view myself as someone who wants to understand how nature works, because as humans we are part of nature and because I am curious and nature fascinates me. Also, I think we should understand the environment we live in in order to survive. There is also a spiritual part in me - and I am as bold as to say this may be true for others, too.

If this spiritual part reads those sentences it cringes (not to mention the scientific part). I think it is highly problematic what Miss Blake says here. I think illness always becomes a part of a person - how else should you cope with it? - but not of one's self, and I don't see why there should be left a void if the illness disappears. Would anyone here feel void without ME? To me it seems there are dogmatic viewpoints in this.

I also don't think that health is one's mission on this earth. o_O Let everyone for oneself decide whether he feels to have a "mission" or not. Sickness is simply part of existence (this is what Miss Blake may mean by "keep ill health coded as part of something that happens"?).

I am highly sceptic about NLP, there's something guru-like in it, and I would call for caution. It's just my opinion and I don't want to offend anyone.

Edit: I think this is interesting - I didn't know all this - and thank you for posting.
 
Inara said:
It's just my opinion and I don't want to offend anyone.
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I'm sorry but I am offended by that. I'm a plain-speaking chap and I think it's important to call a steaming pile of horseshit a steaming pile of horseshit.

I can never read the word "NLP" without being reminded of the murder trial of one of it's founders, Richard Bandler, after a prostitute was shot in the face with his gun.

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Controlled trials have failed to show any benefit from NLP. Numerous literature reviews and meta-analyses have failed to show evidence for NLP's assumptions or effectiveness as a therapeutic method. It's a pile of pseudoscientific crap and I don't care who knows it. Opinions and being offended don't come into it.

After reading Nancy Blake's guest editorial, which I still think is brilliant, I am disappointed to read her other delusional ramblings, although I did notice that her email at the bottom of the editorial was alternatives@alternatives.karoo.co.uk, which set a little alarm bell ringing.
 
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