Totally. Psychobabblers like to prattle on about us sleeping too much, but inability to sleep is a much bigger and more common problem.Who can sleep hasnot reached the worst state.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Totally. Psychobabblers like to prattle on about us sleeping too much, but inability to sleep is a much bigger and more common problem.Who can sleep hasnot reached the worst state.
In this article we propose that whilst ME/CFS may involve the presentation of any number of a wide range of symptoms/sub-disorders, and a broad range of environmental ‘onset’ ‘triggers’, these have their root in a small number of common, core predisposing factors and associated disease facilitating pathophysiological mechanisms
I believe so, yes. Indeed the most efficacious application of broad protocols like mine involves a certain amount of (implicit) 'categorisation' of patients, although the difficulty here is relying on self-reporting and limited test procedures - many issues can be hidden/difficult to disambiguate e.g. mild gastro intestinal disorders/idiopathic gluten sensitivity, untested OI, unconscious behavioural/postural risk factors, buried emotional trauma
Totally. Psychobabblers like to prattle on about us sleeping too much, but inability to sleep is a much bigger and more common problem.
snowathlete
I agree - my sleep is of such poor quality - if get 6hrs on and off I'm lucky and thats with sleep meds - I never go to bed during the day either as couldn't sleep. Like you the only time I stay in bed is when I am really sick - the last 4 times that happened I was admitted to hospital with dehydration. Some days I know its lack of sleep as well as the illness.
People who are really sick do stay in bed but many like us don't sleep. IMO its a myth (or a minority)that people with ME sleep too much.
I don't sleep during the day at all. I don't sleep much during the night either. I am lucky to get about 4 hours.
There are days where I don't get out of bed, it's not because I am tired, it's because I am weak and dizzy and don't have the physical strength to do so. I have tried everything for sleep. Medications leave me feeling physically ill in the morning and actually increase my symptoms. OTC sleep aids may make me drowsy and fall asleep but I also feel ill in the morning, lose my memory of the night before, and they increase my symptoms. I have tried numerous supplements that do nothing. When I do manage to get a few nights of 8 hours, I don't wake up feeling any better, in fact I seem to do better with shorter sleep times. I worked with a doctor regarding sleep issues in the hope that getting a better quality sleep would lead to improvement. Alas, I haven't been able to find an answer because nothing improves my sleep and any measure I take to do so seems to result in worsening of symptoms. It's interesting because I rarely remember dreaming but when I have nights with many crazy memorable dreams, I tend to wake up feeling like a truck has backed over me a few times during the night.
I think back to the days when I was well and doing nursing shifts. By the end of a three night stint, I would be both physically and mentally exhausted from getting maybe 2-3 hours of sleep in the day. I would sleep a solid 8-10 hours after my night shifts were over and wake up feeling refreshed and raring to go. The 8-10 hours were very restorative but that's when I was not ill (oh the good old days).
The problem with having a diagnosis associated with fatigue, people just assume that you sleep a lot because you are tired. I agree with maryb that it's a myth that people with ME sleep too much.
Fair point but additional to this the NHS has a responsibility to ensure that they don't just help such patients onto the right track in attitudinal terms but that the patient then goes away and pursues smart activity (appropriately tailored, monitored, and incremented, so as to be both beneficial and sustainable)
You'll also note the protocol doesn't advocate what most would label 'exercise' in the early stages, and leaves it up to the individual/their specialist advisors to determine what would be most appropriate (in light of the various bits of advice re: pacing and working out sensible limits)
Virtually all GP's (who purport to know about ME/CFS), and many 'specialists'Who sold that?
Indeed it is, and it's a pretty good starting point for those of us who overdo things/burn out, don't get me wrong - it's just not terribly sophisticated/appropriately tailored, or a good long term strategy, in my viewNot overdoing and rest enough will not cure on its own but it is a way to prefend too much worsening
Agreed. What I mean is, those whose sleep improves/need to spend less time sleeping (including half asleep, or trying to sleep/trying to get back to sleep etc)Who can sleep has not reached the worst state
Inclined to agree, which feeds into the oversleep picture (we can't [sustainably] tackle the later, without tackling the former)inability to sleep is a much bigger and more common problem
Who are you talking to then? No one here is doing less than they're safely capable of.Indeed it is, and it's a pretty good starting point for those of us who overdo things/burn out, don't get me wrong - it's just not terribly sophisticated/appropriately tailored, or a good long term strategy, in my view
Right. It happens on its own - if sleep improves, they need to sleep less, and do sleep less. Sleeping less (at least for ME patients) does not improve the quality of sleep.What I mean is, those whose sleep improves/need to spend less time sleeping (including half asleep, or trying to sleep/trying to get back to sleep etc)
Indeed it is, and it's a pretty good starting point for those of us who overdo things/burn out, don't get me wrong - it's just not terribly sophisticated/appropriately tailored, or a good long term strategy, in my view
Agreed. What I mean is, those whose sleep improves/need to spend less time sleeping (including half asleep, or trying to sleep/trying to get back to sleep etc)
Can you describe your level of health comparing now to one year ago. What interventions did you apply that you felt made a difference.
JHW said:I’ve been receiving Perrin Technique manual lymphatic drainage for just over a year, and started pursuing dietary interventions e.g. my leaky gut protocol, around the time I started to put the ME/CFS wellness protocol together last autumn
JHW said:-
The combined impact of these measures hit me pretty hard in terms of illness and weight loss and I only started to ease up on both in the New Year. It is only in the past month or so that I have been willing and felt able to return to research in a meaningful way, and it is only in the last week or two really that I have come to realise just what a significant role physical and behavioural factors (such as posture) may play (in the light of Rowe’s ongoing study)
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Against this background, only very recently have I felt it possible to gauge the impact of D-Ribose/Thyroid support formula and I have yet to finish making the necessary arrangements on the postural/seating front – although I have been avoiding hip flexion except for during my stretch routine. I should also note that I have yet to incorporate some of the suggestions in my protocol into my personal regime
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So it is early days but, so far, in spite of inadequate rest over the past few weeks (thanks primarily to this research!) the signs are encouraging – my sleep has improved (thanks primarily to managing my nocturnal water retention more diligently, plus postural and respiratory discipline) and I have had a few days where I “felt almost like the old me” in terms of mental energy and functioning (thanks presumably to things like D-Ribose supplementation, plus postural and respiratory discipline)
• Diagnosed with EBV and ITP in Summer 2003 following about 6 months of persistent viral infection. Health had been deteriorating since 2000/2001, prior to that I had excellent health/fitness excepting allergiesWere you diagnosed by a physician or are you self-diagnosed?
I'll use the breakdown from my article so I don't miss anything – things that have been most effective for me personally include:What things do you feel have helped you the most?
Continue to develop and refine them, and continue to seek feedback. Possibly consult other researchers to ascertain how relevant sections tally with their findings. Possibly collaborate with other researchers, and perhaps get something published at some pointWhat do you plan to do with your 'hypothesis' and 'protocol' in the future
The protocol is informal (hence “I”), the hypothesis is a more formal presentation (hence “we”)Who is the 'we'? In some of your article you use 'we' as opposed to 'I'
I made the blog/youtube channel as I’ve been intending to do put together an actor’s showreel for some time (planned and cast a few short films to this end) and chose John H Wolfe as my stage name. I added the health research to the blog out of convenience so I’d have everything blog-like in one placeI am just curious, why do you use a pseudonym?
If you’d like to suggest an alternative approach to gaining an understanding of/discussing/presenting the processes that may be involved in pathogenesis please feel free..I am still under the impression that you have cobbled together research on ME/CFS
I don’t remember ever having claimed that its constituent elements are particularly groundbreaking or cutting edge? It’s an amalgamation of advice/’expertise’ that I feel will benefit PWME, given my understanding of the illness, that is allYour protocol involves nothing new
Would you rather I was pushing a particular drug? My understanding of the illness simply leads me to make the suggestions I do, that many of them can be positively influenced by (largely simple/free) lifestyle improvements should be a cause for celebration, not cynicism surely!?seems to be aimed mostly at lifestyle improvements
I think you’ve confused me for a salesman. I came here to get feedback, not to be interrogated or compelled to justify my efforts as being in some way special or unique. I’ll leave it to interested parties to determine whether my theory/advice holds any waterWhat sets your protocol apart from others?
I don’t disagree, and I do intend to tighten up the evidence base in so much as is possible as I ‘refine’ the contentYou link to some research that hasn't been replicated, don't have enough subjects to be indicative of anything, use unacceptable criteria, are really researching fatigue, are published by people who seem to be making money off the research
This will probably never be a definitive (scientifically robust) theory, at least not in our lifetimes – it’s an extremely broadly based conceptual model, not (currently) a testable hypothesis (short of pooling vast medical/scientific knowledge/resources, to substantiate the constituent hypotheses, which would be fantastic don’t get me wrong!)A definitive hypothesis/theory should have valid, reliable, and replicated research behind it
I am working on that, as I’m sure you’ll appreciate looking at PART VI it’s not the simplest thing to explain concisely, or precisely, particularly when where I’m at is getting a sense of the interconnected pathology, rather than drilling down and understanding all the mechanisms, their relations, and likely order of sequencing involvedYour hypothesis is not clearly stated
I’m not sure what it is you are trying to say. If in attempting to solve a problem that effects me personally, and millions of people the world over besides, is to be interpreted as ‘setting myself up in a position of authority’ then so be it? I don’t act as if I have great authority or all the answers, I just state my views based upon my knowledge and conceptualisation – every bit as fallible as the next layman..You seem to setting yourself up in a position of authority regarding ME by devising a hypothesis and protocol and offering all sorts of advice in a blog
Again, I’m not really here to sell myself/justify my efforts. I’d rather people focus on the material than on me/my personal view of my own theoryThere are many theories and treatments offered on the internet that are untested by scientific research that seem to rely on personal opinion and personal experience. What sets you apart?
Again, the good thing as far as I’m concerned is that if I’m right in my theory, and my advice is indeed sensible, then it can pretty much be pursued for free and we can help ourselves hasten our own recoveryThese protocols fail to help and it's just more money out of our wallets and more disappointment
There may be no, single, clear, simple, answer to the highly complex disorder that is ME/CFS. I don’t see why I “should” be searching for it, I’m free to take the approach that I deem to be most likely to produce results and I would encourage others to remain as open minded as possible about the ways in which we may, as a community, gain important insights over timeyou should be providing clear answers
Aye, I’m working on refining this all the time – would help if I could settle on the terminology/more precisely on the core mechanisms first! (still in development really)a clear hypothesis
I think I’ve already explained this but I believe ME/CFS is a problem with systemic stress reaching a threshold level beyond which important systems go into melt down – the protocol aims to reduce systemic stress from all the angles it’s thus far occurred to me to cover (feel free to suggest others)a clear reason why your protocol would be advantageous to people with ME
I don’t see further narrowing by nuances of particular definitions as particularly useful I’m afraid. I’d rather bring the greatest good to the greatest number than get bogged down in focusing forensically on definitions or arbitrary sub-groups (which may well simply be patients at a different stage in the pathogenesis of the same condition/patients with different pathological presentation of the same core pathophysiological processes in many cases)You also need to define what criteria you are using -- CCC, ICC, Fukuda, London, Oxford
You don’t think these things bring benefits to health?Your protocol offers a lot of common sense -- maximize health, target symptoms, relieve stress, change diet and they would be reasonable if they really worked
Well let’s hope this one is different!What I have not seen with protocols like yours is a big dent in the number of people remaining ill
Citizens of the worldWhat population is your protocol aimed at?
If this is a protocol for all of these groups, then you're essentially talking about Oxford, which is really just "fatigue". This is an ME/CFS forum, not a fatigue forum.John H Wolfe said:I don’t see narrowing by nuances of particular definitions as particularly useful I’m afraid. I’d rather bring the greatest good to the greatest number than get bogged down in focusing forensically on definitions or arbitrary sub-groups (which may well simply be patients at a different stage in the pathogenesis of the same condition/patients with different pathological presentation of the same core pathophysiological processes in many cases)Kina said:You also need to define what criteria you are using -- CCC, ICC, Fukuda, London, Oxford
For me, the vast majority (and possibly all?) PWME experience both cognitive and physical fatigue in some measure, although one may dominate and patients may not describe sub-normal energy in either realm as necessarily relating to 'fatigue' necessarily - particularly if they've adapted their lifestyles to stay more in sync with what is manageable/sustainableFirst is the physically fatigued vs the cognitively fatigued
Is that so? Any mental activity? I must say, (except in exceptional cases) that would surprise meSome can get out and walk or excercise mildly, but can't sustain any mental activity
This seems more likely/common - often a function of things like distinct OI profiles, mitochondrial profiles, myalgia/allodynia/deconditioning I'd have thoughtSome people seem to be able to read and write ok, but can't walk from one side of the room to the next
Some PWME suffer from Drug-Induced Hypersensitivity Syndrome, which may also be triggered by herpesviridae. It wouldn't surprise me if there was a strong correlation between infection with herpesviridae and subsequent intolerance to certain chemical medicines in the population of PWME who get sick on medssome of us get terribly sick on most medications, and others can process meds seemingly ok
Possibly aye. I haven't focused too much on the liver (yet), although hepatic dysfunction has come up in relation to leaky gut and it is associated with toxin processing so I agree that it could well have a role to play and possibly explain some of the differences in presentationMaybe this provides a clue to the function of the liver and can be a critical guide post for determining treatment
SNPs?I think the Amino Acids profiles and SNP's should provide some better clues once that is understood more
Inclined to agree, although I see glutathione as one aspect of good health that falls foul of, and then accelerates, the broader picture of disorder(associated with neural hyper-sensitisation in my hypothesis)My gut instinct is that Rich Van K had it right with the glutathione hypothesis for a large number of us, but just did not have enough time/resources to identify the mechanics and specifics for how to put it in to better treatment accross a wide range of people
Agreed;- often ending up attempting to sleep in conditions (external/internal) that make good quality restorative sleep unlikely and potentially worsening dehydration/hypovolemia and SNS stimulation (feel even worse when they finally rise), and disruption of circadian rhythms, in the process (undermine quality of sleep on following nights)For some I think the problem is that the quality becomes so low that they are forced to try to sleep longer to get anything close to the restoration that they need
Ditto. I've observed:It's interesting because I rarely remember dreaming but when I have nights with many crazy memorable dreams, I tend to wake up feeling like a truck has backed over me a few times during the night
Perhaps not, but it would great if they did and I feel that simply hitting patients with one aspect of what I believe is necessary (a multi-facted/factorial approach) leaves patients somewhat in the lurchThe NHS doesn't have a clue on the best activity for PWME and how to monitor it
You advocate an alternative to breaking things down and doing them in a more measured/manageable way/pace?As you are probably aware both the FINE and the PACE trial failed. That means that including these concepts in your "program" dooms it to failure as well in that part
I do hope being quite so rude makes you feel better – at least that way this exchange is satisfying at least one part of my brief in posting hereMy feeling is that you are merely parroting what I heard from the GET psychobabble crowd
Perhaps you could expand upon what you mean by this - your comment doesn’t follow from mineWho are you talking to then? No one here is doing less than they're safely capable of
I’m not sure where you got this ‘sleeping less’ thing from? I advocate avoiding oversleeping in my protocol, which is different (subjective, and relative, rather than absolute)Sleeping less (at least for ME patients) does not improve the quality of sleep
Surely you can see that we all benefit from support, advice, advocacy etc in various ways/to varying degrees.The ones who do recover have never needed help learning how to sleep or live properly that I've ever heard of
Perhaps you’d care to substantiate that conclusion?You seem to be creating and marketing a product for a population that doesn't exist: formerly ill people who are no longer ill yet still think they are