I can't really say that I am close to being convinced that the Perrin Technique is a valid treatment for ME/CFS
My own view is that it is helpful in so far as it can help bring about remission as it involves techniques that improve not just lymphatic drainage/systemic detoxification but also improves the neural sensitisation picture (which I believe lies at the core of our illness) by (somewhat inadvertently) neuromuscular tension/functional mobility
I really can't say much though because I haven't participated in this technique
I have, and for me it seems a helpful, if incomplete and rather hard going, treatment and protocol
Just as an aside, if you are trying to keep your real name private, it's quite easy to find what it is with a simple search
I’m not don’t worry, if that were the reason for the pseudonym I’d have said. Out of interest, how did you perform this simple search?
I just can't get my head around your hypothesis and/or theory and I am still not clear what it is
Essentially my theory currently relates the core pathology of ME/CFS to a background process of peripheral nerve sensitisation ~ sensitising both the central and sympathetic nervous systems
Any systemic stress layered atop that background process further enhances central/sympthatic disarray and hence worsens symptoms. Hence, for me, the route out of ME/CFS is the alleviation of the background process along with the avoidance of systemic stress from any source in so much as is possible
For research to be relevant and valid, it must be about people with ME with a clearly defined criteria and it must rule out those who do not have ME. Much of the research is very poor in this respect
Agreed, it’s best to be sure that the research relates to ME/CFS, rather than just CFS or chronic fatigue in so far as is possible. This is something I should work on as I develop the piece and will certainly have to work on should I wish to get published, fair point
Did you identify any specific sources in my article that concern you in this regard or was it just a general impression you got?
You would have to suggest multiple drugs in your protocol because it addresses multiple issues related to multiple physiological systems
I’m sure you can appreciate that this is where pharmacological interventions get extremely complicated/potentially hazardous, and that kind of advice is beyond the paygrade of most qualified pharmacologists, never mind ‘armchair researchers’!
I was asking simply if you thought there was anything different or unique about your protocol
My protocol is the practical embodiment of my efforts. I think that the theory that informs it is indeed unique, and the combination of/implicit relative import of the ‘targets’ are of course likely to be unique because of this, but I am quite aware that a lot of the constituent elements have been proposed in some shape or form, at some stage, in some place, by some person, over the years
This does not mean it is flawed advice, it simply means it shares similarities with certain aspects, or certain treatments, that have had mixed effects on patients in the past
you come across as being very defensive and angry when members criticize your protocol or hypothesis
If some of my responses have been somewhat short it is because of the level of unnecessary/unprovoked antagonism/rudeness I have faced in some of the posts – any ‘neutral’ would tell you that. I haven’t risen to it, I’ve kept a cool head and stayed calm, and relatively civil. Any neutral will confirm this
we need more research with strict adherence to researching subjects using the proper criteria for inclusion
Agreed, but to abandon literature reviews, meta analysis (of empirical/experiential data), and conceptual models based thereupon would be to miss a trick
when people question you, you tell them to go read your protocol even though they have
If they question me on the specifics then I engage with them, if they level general (emotive) ‘impressions’ (suppositions/presumptions) at me that do not reflect consideration of the material in the round then they’re unlikey to meet with a particularly favourable response
Perhaps you could accept that some of your views and conceptualizations may be incorrect and/or damaging to PWME
Absolutely, at no point have I suggested I am some infallible authority on the disease process(es) or associated implications for treatment
What is it that would make me read yours and try yours over others?
That isn’t really for me to say is it, I don’t know you, you position (experience with the illness/expertise in associated areas) or what motivates you
On a more general level, I would hope that a conceptual model indicative of a great deal of research and joined up thinking, combined with a broad basis for treatment options (most of them fairly simple/free/self administered) would present an appetising prospect to most patients ~ with the implication that they digest the information for themselves, reach their own conclusions, and cherry pick if necessary, as appropriate
It's sensible in terms of helping to maximize health status
At least we can agree upon this
it is likely not helpful for ME patients to get better
I’m not sure I follow. Surely if it is sensible in helping maximise health then it is (more) likely (than not) to be helpful (if not a cure all) at least in some cases?
Please provide some research that definitively shows that we can 'hasten our recovery' by following a protocol such as yours
I would love to, and should I continue with this work that would doubtless be an objective. Needless to say, clinical studies are not exactly the next stepping stone when you are just starting out in health research as a private individual with limited contacts/resources
From your statement, I do get a sense that you really don't understand ME very well
Perhaps you could explain why that is?
Well then, don't get angry and annoyed when people criticize your approach
I am neither angry nor annoyed, I don’t waste energy getting worked up over the comments of anonymous strangers, don’t worry, but nor do I ‘lie down for people’ (who bare me contempt)
What do you actually mean by 'systemic stress'
Essentially it covers direct and indirect stimulation of important systems e.g. nervous/immune systems, or exhaustion/degradation of related support mechanisms e.g. nourishment/restorative rest of these systems, that induces/produces (directly or otherwise) inflammatory/sympathetic/hormonal ‘stress’ responses
if anything these people should develop ME because their systems are in melt-down and have been for years
That depends, if neural hyper-sensitivity syndrome is not in the background for long enough/sufficiently pronounced then, given the relations espoused in my hypothesis, it seems logical to suppose that these patients would be unlikely to develop ME/CFS
You should 'bog' yourself down in the diagnostic criteria if you are going to write about ME/CFS
Please see the introduction to my article. I’m open to any specific suggestions for further refinement
My point is that some of us lead very healthy lifestyles but are still extremely sick. You seem to be unable to accept this
Not sure where you got that idea from? I lead a very healthy lifestyle and am not yet recovered myself!
There are identical protocols out there
Can you link me to some of them please?
Why not aim it at people diagnosed with ME/CFS via either the CCC or ICC rather than the whole world
I aim it at people who have ME/CFS, whether they have been diagnosed or not, by this criteria or that. What’s important to me is that the advise is congruent with what I know/believe about the illness ME/CFS (as outlined in the introduction to my hypothesis article). Of course I am happy to further refine this outline for clarity if I see a compelling reason to do so but otherwise I’m content