Wolfe Hypothesis ~ Key causative processes involved in CFS/CFIDS/M.E.
- Thread starter John H Wolfe
- Start date
- Messages
- 10,157
- Likes
- 17,077
John H Wolfe
Some questions:
Can you describe your level of health comparing now to one year ago. What interventions did you apply that you felt made a difference.
Were you diagnosed by a physician or are you self-diagnosed?
What things do you feel have helped you the most?
What do you plan to do with your 'hypothesis' and 'protocol' in the future.
Who is the 'we'? In some of your article you use 'we' as opposed to 'I'.
I am just curious, why do you use a pseudonym?
Personally, I am still under the impression that you have cobbled together research on ME/CFS and I must include fatigue in here too because research in ME/CFS often uses criteria that doesn't differentiate tired people from people with a clinical condition that can't be resolved by merely applying lifestyle improvements. Your protocol involves nothing new and seems to be aimed mostly at lifestyle improvements. What sets your protocol apart from others?
My criticism of your hypothesis and protocol are as follows.
Your article is well-researched but you 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 is a problem. A definitive hypothesis/theory should have valid, reliable, and replicated research behind it.
Your hypothesis is not clearly stated.
Nobody thoroughly understands the physical causes of ME, and substantial recovery through any protocol (yours or others) is rarely ever realized. 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. There 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?
Your protocol, other than the suggestions regarding exercise on the surface would likely do no harm. Please realize that why we question and why we criticize constructively is partially related to the fact that many of us have been ill for quite awhile. People with theories and protocols come and go suggesting they have answers and helpful protocols. These protocols fail to help and it's just more money out of our wallets and more disappointment. Basically, you should be providing clear answers, a clear hypothesis, and a clear reason why your protocol would be advantageous to people with ME. You also need to define what criteria you are using -- CCC, ICC, Fukuda, London, Oxford because right now your protocol doesn't seem to be aimed at people with ME/CFS.
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. What these types of protocols offer is hope and a few things that may or may not help. What I have not seen with protocols like yours is a big dent in the number of people remaining ill. What population is your protocol aimed at?
Some questions:
Can you describe your level of health comparing now to one year ago. What interventions did you apply that you felt made a difference.
Were you diagnosed by a physician or are you self-diagnosed?
What things do you feel have helped you the most?
What do you plan to do with your 'hypothesis' and 'protocol' in the future.
Who is the 'we'? In some of your article you use 'we' as opposed to 'I'.
I am just curious, why do you use a pseudonym?
Personally, I am still under the impression that you have cobbled together research on ME/CFS and I must include fatigue in here too because research in ME/CFS often uses criteria that doesn't differentiate tired people from people with a clinical condition that can't be resolved by merely applying lifestyle improvements. Your protocol involves nothing new and seems to be aimed mostly at lifestyle improvements. What sets your protocol apart from others?
My criticism of your hypothesis and protocol are as follows.
Your article is well-researched but you 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 is a problem. A definitive hypothesis/theory should have valid, reliable, and replicated research behind it.
Your hypothesis is not clearly stated.
Nobody thoroughly understands the physical causes of ME, and substantial recovery through any protocol (yours or others) is rarely ever realized. 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. There 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?
Your protocol, other than the suggestions regarding exercise on the surface would likely do no harm. Please realize that why we question and why we criticize constructively is partially related to the fact that many of us have been ill for quite awhile. People with theories and protocols come and go suggesting they have answers and helpful protocols. These protocols fail to help and it's just more money out of our wallets and more disappointment. Basically, you should be providing clear answers, a clear hypothesis, and a clear reason why your protocol would be advantageous to people with ME. You also need to define what criteria you are using -- CCC, ICC, Fukuda, London, Oxford because right now your protocol doesn't seem to be aimed at people with ME/CFS.
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. What these types of protocols offer is hope and a few things that may or may not help. What I have not seen with protocols like yours is a big dent in the number of people remaining ill. What population is your protocol aimed at?
More food for thought when identifying sub-sets of patients.
Couple of potential groups seem to jump out when looking at CFS/ME patients. First is the physically fatigued vs the cognitively fatigued. Some can get out and walk or excercise mildly, but can't sustain any mental activity. Some people seem to be able to read and write ok, but can't walk from one side of the room to the next.
Another potential group might be looking at liver function when determining how to treat a patient. For instance, some of us get terribly sick on most medications, and others can process meds seemingly ok. Maybe this provides a clue to the function of the liver and can be a critical guide post for determining treatment.
I think the Amino Acids profiles and SNP's should provide some better clues once that is understood more. 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.
Couple of potential groups seem to jump out when looking at CFS/ME patients. First is the physically fatigued vs the cognitively fatigued. Some can get out and walk or excercise mildly, but can't sustain any mental activity. Some people seem to be able to read and write ok, but can't walk from one side of the room to the next.
Another potential group might be looking at liver function when determining how to treat a patient. For instance, some of us get terribly sick on most medications, and others can process meds seemingly ok. Maybe this provides a clue to the function of the liver and can be a critical guide post for determining treatment.
I think the Amino Acids profiles and SNP's should provide some better clues once that is understood more. 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.
Some people with ME sleep a lot cause they need to. same as any hunan when they are not well with just about any disease that puts strain on their bodily systems. But worse in a lot of cases as we have uncategorized sleep disorders.
those who dont sleep a lot tend not to because they cant sleep well, so there is little benefit. I found that staying in bed does not mean i can sleep so there is little point unless i am in a crash and then I have no option but to stay in bed (though in my case i dont sleep). For me sleeping too much is certainly not the problem.
My sleep consultant (NHS) looked at all my sleep test results and said it was typical for ME - she couldn't give me a label for it but said it was clear my sleep was v poor quality. She improved it with drugs, but I still can't really sleep more (longer) though I feel I need it and would like to. If only I could.
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.
those who dont sleep a lot tend not to because they cant sleep well, so there is little benefit. I found that staying in bed does not mean i can sleep so there is little point unless i am in a crash and then I have no option but to stay in bed (though in my case i dont sleep). For me sleeping too much is certainly not the problem.
My sleep consultant (NHS) looked at all my sleep test results and said it was typical for ME - she couldn't give me a label for it but said it was clear my sleep was v poor quality. She improved it with drugs, but I still can't really sleep more (longer) though I feel I need it and would like to. If only I could.
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.
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 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.
- Messages
- 10,157
- Likes
- 17,077
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.
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.
I can relate to the OTC remedies not helping. I tried OTC drugs and herbal stuff like Valerian etc, but it just made me feel crap and didn't improve my sleep. I've always had sleep issues, but it got a lot worse as I came down with ME and I was struggling to get 8 hours sleep in a week, let alone a single night. I was lucky in the end because it actually took getting diagnosed with ME before my GP would refer me to a sleep consultant. When I got diagnosed with ME the 'specialist' at least wanted to rule out sleep apnea so she insisted and that meant I got my referral. After a very long wait I saw her and she order a full sleep study. That was an experience!
Anyway, I think I got lucky again because she understood that ME was a real physiological disease and came with major sleep problems, and she recommended one or two drugs to try. The first worked incredibly well, but she warned me that the first two weeks would be hell from side effects (which they were) and then would resolve (which they did) ... what I learnt from this was that the right drug selected by someone who really knows what they are doing, can work wondered for sleep. My sleep isn’t perfect by a long way but it is 600% better than it was. So its well worth seeing a true specialist, if you can.
I think everyone with ME who has sleep problems should be referred to a specialist because it is one of the only areas where they can actually make a true difference to your quality of life. It doesn’t fix it, but it can make it a lot better.
Still no return to dreaming though, which I used to get a lot before I had ME, but now I never dream.
The other thing my sleep specialist said was that because I have ME I need MORE time in bed than other people with sleep issues. As part of the process she restricts sleep, so that you sleep better when you do sleep, and because some drugs have a fairly short half-life, and at first she normally sets it to 6 hours a night only, but for me she said I needed 8 hours, because it wouldnt be possible for me to do less.
Alas, having just started antibiotics, my sleep has gone awry again, which is very concerning for me at the moment
Anyway, I think I got lucky again because she understood that ME was a real physiological disease and came with major sleep problems, and she recommended one or two drugs to try. The first worked incredibly well, but she warned me that the first two weeks would be hell from side effects (which they were) and then would resolve (which they did) ... what I learnt from this was that the right drug selected by someone who really knows what they are doing, can work wondered for sleep. My sleep isn’t perfect by a long way but it is 600% better than it was. So its well worth seeing a true specialist, if you can.
I think everyone with ME who has sleep problems should be referred to a specialist because it is one of the only areas where they can actually make a true difference to your quality of life. It doesn’t fix it, but it can make it a lot better.
Still no return to dreaming though, which I used to get a lot before I had ME, but now I never dream.
The other thing my sleep specialist said was that because I have ME I need MORE time in bed than other people with sleep issues. As part of the process she restricts sleep, so that you sleep better when you do sleep, and because some drugs have a fairly short half-life, and at first she normally sets it to 6 hours a night only, but for me she said I needed 8 hours, because it wouldnt be possible for me to do less.
Alas, having just started antibiotics, my sleep has gone awry again, which is very concerning for me at the moment
Concentrating on exercise or activity in remission or at times when one feels a little better is a disaster. I've seen no evidence that working with outside advisors and activities is beneficial for patients who are at those stages.
In my own case this approach when I have been feeling well enough to consider exercise or increasing my activities has never worked and I have never seen it work on other patients. The NHS doesn't have a clue on the best activity for PWME and how to monitor it. 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.
Patients who are in remission or are at a stage of a little more energy need to be advised in not overdoing it rather than taking advise from an outsider who usually has not idea of what the patient is facing "monitoring, tailoring and esp, incremented activity" is usually a disaster for patients in the way the NHS approaches it. The patient isn't going to have their capacity monitored as per the Lights or the Pacific Labs.
Patients need to find their own limits and test their own endurance with in very gentle and safe limits. Having to spend extra energy on an outside "advisor" means even more energy. I've seen people crashed and told that they should be attending a clinic and reporting back, for this to add to the crash and making things worse.
I don't know what you have done in practical terms but I am the survivor of the graded exercise programs and most of their variations since then. When I feel better I do more. It's a natural thing and involving a third party from the NHS has been a disaster for me in the way you describe what you want to see,
My feeling is that you are merely parroting what I heard from the GET psychobabble crowd. They want to be able to make a living on patients and this is another futile attempt for them to "add some value". It doesn't work sadly and there is no evidence that it works.
In my own case this approach when I have been feeling well enough to consider exercise or increasing my activities has never worked and I have never seen it work on other patients. The NHS doesn't have a clue on the best activity for PWME and how to monitor it. 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.
Patients who are in remission or are at a stage of a little more energy need to be advised in not overdoing it rather than taking advise from an outsider who usually has not idea of what the patient is facing "monitoring, tailoring and esp, incremented activity" is usually a disaster for patients in the way the NHS approaches it. The patient isn't going to have their capacity monitored as per the Lights or the Pacific Labs.
Patients need to find their own limits and test their own endurance with in very gentle and safe limits. Having to spend extra energy on an outside "advisor" means even more energy. I've seen people crashed and told that they should be attending a clinic and reporting back, for this to add to the crash and making things worse.
I don't know what you have done in practical terms but I am the survivor of the graded exercise programs and most of their variations since then. When I feel better I do more. It's a natural thing and involving a third party from the NHS has been a disaster for me in the way you describe what you want to see,
My feeling is that you are merely parroting what I heard from the GET psychobabble crowd. They want to be able to make a living on patients and this is another futile attempt for them to "add some value". It doesn't work sadly and there is no evidence that it works.
Virtually all GP's (who purport to know about ME/CFS), and many 'specialists'
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)
Inclined to agree, which feeds into the oversleep picture (we can't [sustainably] tackle the later, without tackling the former)
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)
Inclined to agree, which feeds into the oversleep picture (we can't [sustainably] tackle the later, without tackling the former)
Who are you talking to then? No one here is doing less than they're safely capable of.
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.
Your advice seems to be aimed at patients who are no longer sick. There are very few people who recover from long term ME/CFS. The ones who do recover have never needed help learning how to sleep or live properly that I've ever heard of.
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.
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.
Your advice seems to be aimed at patients who are no longer sick. There are very few people who recover from long term ME/CFS. The ones who do recover have never needed help learning how to sleep or live properly that I've ever heard of.
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.
The problem is that the M.E. patient is seen as a liability to doctors. A) They do not know how to treat them or where to start because it requires multidisciplinary knowledge B) They will require usually lots of testing which they do not enjoy doing, perhaps because it signals a red flag to insurance companies for potential "abuse" of testing in their eyes.
Basically what I am saying is a 30$ copay is generally not enough motivation for the average schmuck doctor to investigate thoroughly.
Most docs are not willing to practice inductive reasoning. They want to deduce everything from their medical textbooks or big pharma's ideas of what constitutes illness. Big pharma generally does not even talk about hormones.
Basically what I am saying is a 30$ copay is generally not enough motivation for the average schmuck doctor to investigate thoroughly.
Most docs are not willing to practice inductive reasoning. They want to deduce everything from their medical textbooks or big pharma's ideas of what constitutes illness. Big pharma generally does not even talk about hormones.
- Messages
- 2,512
- Likes
- 2,689
It is the only good strategy. Those who keep overdoing will get to the point of no return and dy. Seems you missed the death reports.
You still seem to think patients are stupid. The body needs lots of good sleep to improve and that can take a very long time. The longer one has pushed the longer it takes to improve.
Who the hell do you think will try to sleep or try to go back to sleep when they are rested?
Stop pretending you know better than nature.
You still seem to think patients are stupid. The body needs lots of good sleep to improve and that can take a very long time. The longer one has pushed the longer it takes to improve.
Who the hell do you think will try to sleep or try to go back to sleep when they are rested?
Stop pretending you know better than nature.
• 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 allergies
• Diagnosed with Chronic Inflammation when referred to the head of immunology at that same hospital (hay fever had gone off the charts - grass allergy 6 times the norm) in Autumn 2003
• Diagnosed with 'CFS' by my GP when I returned to the UK in Summer 2004
• Self diagnosed with ME/CFS in Spring 2012 (before that it had been my father who took an interest in research, I was more concerned with 'living my life' [often in less than sensible ways!])
• Dr. Perrin confirmed I fit the profile for ME/CFS in Summer 2012
• Formal diagnosis of 'CFS/ME' by the specialist hospital clinic in Spring 2013
• Comment of "likely autonomic dysfunction mainly manifested as POTS in the context of Chronic Fatigue Syndrome" following an interview/examination at a hospital for neurology in Spring 2013
I'll use the breakdown from my article so I don't miss anything – things that have been most effective for me personally include:
Attitude
• Learning to be super stoical, simply not allowing stress or negativity to enter my life
• The attitude of others (support and understanding) has no doubt been a great asset
Physical Aspects
• Avoiding boom and bust behaviours (unfortunately this one has taken me many years to get right/care enough about to make sure I get right, being a sports addict didn’t help)
• Taking adequate rest (particularly from mental concentration/energy intensive stuff – something I still don’t manage very sensibly but I like to think it’s for a good cause!)
• Becoming more active/getting more fresh air and sunshine as I recovered from the harshest (viral) onset/relapse triggers
• Avoidance of stimulants e.g. caffeine, intense computer games, argument
• Warm sunshine and cool hydrotherapy e.g. summer pool lounging, was very therapeutic. Also find warm baths and showers relaxing/refreshing – a well timed shower can add 5-10% fresh/alertness/physical comfort ahead of a social engagement I find
• Keeping the room I’m in cool is beneficial, warm environments tend to make me konk out (vasodilation worsens OI)
Circulation & Respiration
• Drinking plenty of water + supporting retention with salt (I dehydrate really easily, always have – suspect I had OI since infancy for this and other reasons e.g. cold extremeties, never comfortable standing still, lying down under clothes rails when taken shopping as a child etc)
• Buteyko breathing really helps with headaches/relaxation/freshness
• Perrin Technique manual lymphatic drainage – has been quite onerous but it has improved my encephamylitis and ACNE on my back considerably and when I took a break from it over the Christmas period it felt as if my baseline cognitive functioning had improved (and it may be coincidental but it’s fair to say that I would not have been able to get my head around any of my research this time last year)
Nutrition
• Avoiding drinking too much in the evenings + supporting retention with salt + elevating bed by 8” has helped with sleep disturbance associated with nocturnal diuresis
• Avoidance of gluten improves my level of ‘dopeyness’, bloating, skin, eye ‘tiredness’ (light soreness)
• Blood sugar balance, day and night has helped me stopped feeling so hypoglycaemic/jittery, and improved my appetite, in the AM ~ avoidance of refined carbs/high GI foods
• ‘Adequate’ (enhanced, and more regular/frequent) protein intake has stabilised my weight loss, even on a fairly strict leaky gut protocol
Mitochondrial energy
• D-Ribose and magnesium, combined with supporting CQ-10, L-Cartinite, have given me marked improvements in mental energy/concentration
Other sources of systemic stress
• Avoiding prolonged (lumbar) compression / nerve flexion has made me feel more comfortable/less ‘beat up’ these past couple of weeks
Also found Chinese medicine quite a nice way to detox, although the refreshing effects were relatively short lived
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 point
The protocol is informal (hence “I”), the hypothesis is a more formal presentation (hence “we”)
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 place
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 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 all
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!?
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 water
I don’t disagree, and I do intend to tighten up the evidence base in so much as is possible as I ‘refine’ the content
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!)
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 involved
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..
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 theory
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 recovery
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 time
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)
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)
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 don’t think these things bring benefits to health?
Well let’s hope this one is different!
Citizens of the world
• Diagnosed with Chronic Inflammation when referred to the head of immunology at that same hospital (hay fever had gone off the charts - grass allergy 6 times the norm) in Autumn 2003
• Diagnosed with 'CFS' by my GP when I returned to the UK in Summer 2004
• Self diagnosed with ME/CFS in Spring 2012 (before that it had been my father who took an interest in research, I was more concerned with 'living my life' [often in less than sensible ways!])
• Dr. Perrin confirmed I fit the profile for ME/CFS in Summer 2012
• Formal diagnosis of 'CFS/ME' by the specialist hospital clinic in Spring 2013
• Comment of "likely autonomic dysfunction mainly manifested as POTS in the context of Chronic Fatigue Syndrome" following an interview/examination at a hospital for neurology in Spring 2013
I'll use the breakdown from my article so I don't miss anything – things that have been most effective for me personally include:
Attitude
• Learning to be super stoical, simply not allowing stress or negativity to enter my life
• The attitude of others (support and understanding) has no doubt been a great asset
Physical Aspects
• Avoiding boom and bust behaviours (unfortunately this one has taken me many years to get right/care enough about to make sure I get right, being a sports addict didn’t help)
• Taking adequate rest (particularly from mental concentration/energy intensive stuff – something I still don’t manage very sensibly but I like to think it’s for a good cause!)
• Becoming more active/getting more fresh air and sunshine as I recovered from the harshest (viral) onset/relapse triggers
• Avoidance of stimulants e.g. caffeine, intense computer games, argument
• Warm sunshine and cool hydrotherapy e.g. summer pool lounging, was very therapeutic. Also find warm baths and showers relaxing/refreshing – a well timed shower can add 5-10% fresh/alertness/physical comfort ahead of a social engagement I find
• Keeping the room I’m in cool is beneficial, warm environments tend to make me konk out (vasodilation worsens OI)
Circulation & Respiration
• Drinking plenty of water + supporting retention with salt (I dehydrate really easily, always have – suspect I had OI since infancy for this and other reasons e.g. cold extremeties, never comfortable standing still, lying down under clothes rails when taken shopping as a child etc)
• Buteyko breathing really helps with headaches/relaxation/freshness
• Perrin Technique manual lymphatic drainage – has been quite onerous but it has improved my encephamylitis and ACNE on my back considerably and when I took a break from it over the Christmas period it felt as if my baseline cognitive functioning had improved (and it may be coincidental but it’s fair to say that I would not have been able to get my head around any of my research this time last year)
Nutrition
• Avoiding drinking too much in the evenings + supporting retention with salt + elevating bed by 8” has helped with sleep disturbance associated with nocturnal diuresis
• Avoidance of gluten improves my level of ‘dopeyness’, bloating, skin, eye ‘tiredness’ (light soreness)
• Blood sugar balance, day and night has helped me stopped feeling so hypoglycaemic/jittery, and improved my appetite, in the AM ~ avoidance of refined carbs/high GI foods
• ‘Adequate’ (enhanced, and more regular/frequent) protein intake has stabilised my weight loss, even on a fairly strict leaky gut protocol
Mitochondrial energy
• D-Ribose and magnesium, combined with supporting CQ-10, L-Cartinite, have given me marked improvements in mental energy/concentration
Other sources of systemic stress
• Avoiding prolonged (lumbar) compression / nerve flexion has made me feel more comfortable/less ‘beat up’ these past couple of weeks
Also found Chinese medicine quite a nice way to detox, although the refreshing effects were relatively short lived
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 point
The protocol is informal (hence “I”), the hypothesis is a more formal presentation (hence “we”)
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 place
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 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 all
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!?
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 water
I don’t disagree, and I do intend to tighten up the evidence base in so much as is possible as I ‘refine’ the content
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!)
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 involved
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..
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 theory
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 recovery
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 time
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)
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)
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 don’t think these things bring benefits to health?
Well let’s hope this one is different!
Citizens of the world
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.
What sorts of pain have you experienced? Can you describe your PEM/PENE triggers and symptoms? I'm afraid your self-diagnosis plus confirmation from a UK clinic is not useful... they use Oxford, which means you have chronic fatigue - not necessarily ME/CFS.
Have you been receiving CBT/GET from a clinic? Because it sounds quite a bit like you're repeating their spiel.
What sorts of pain have you experienced? Can you describe your PEM/PENE triggers and symptoms? I'm afraid your self-diagnosis plus confirmation from a UK clinic is not useful... they use Oxford, which means you have chronic fatigue - not necessarily ME/CFS.
Have you been receiving CBT/GET from a clinic? Because it sounds quite a bit like you're repeating their spiel.
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/sustainable
Is that so? Any mental activity? I must say, (except in exceptional cases) that would surprise me
This seems more likely/common - often a function of things like distinct OI profiles, mitochondrial profiles, myalgia/allodynia/deconditioning I'd have thought
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 meds
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 presentation
SNPs?
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)
Is that so? Any mental activity? I must say, (except in exceptional cases) that would surprise me
This seems more likely/common - often a function of things like distinct OI profiles, mitochondrial profiles, myalgia/allodynia/deconditioning I'd have thought
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 meds
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 presentation
SNPs?
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)
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)
Ditto. I've observed:
Sleeping on my back ~ sleep apnoea/hyperventilation
Not using a nasal spray before bed in hay fever season ~ sleep apnoea/hyperventilation
Having a full bladder ~ discomfort ~ stress response
Doing any physical activity before bed when my SNS/nerves are sensitised ~ SNS/central sensitisation ~ stress response
..all correlate with this in my case
Ditto. I've observed:
Sleeping on my back ~ sleep apnoea/hyperventilation
Not using a nasal spray before bed in hay fever season ~ sleep apnoea/hyperventilation
Having a full bladder ~ discomfort ~ stress response
Doing any physical activity before bed when my SNS/nerves are sensitised ~ SNS/central sensitisation ~ stress response
..all correlate with this in my case
John H Wolfe
Hi John - looking at your reply to Kina - I would say I've done everything you've done. I got no improvement from coq10 and just got 'wired' from d-ribose, but I'm no better......
Its a comprehensive list but I'm sure many in the UK can say the same as me.
Hi John - looking at your reply to Kina - I would say I've done everything you've done. I got no improvement from coq10 and just got 'wired' from d-ribose, but I'm no better......
Its a comprehensive list but I'm sure many in the UK can say the same as me.
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 lurch
You advocate an alternative to breaking things down and doing them in a more measured/manageable way/pace?
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 here
You advocate an alternative to breaking things down and doing them in a more measured/manageable way/pace?
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 here
snowathlete said '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'
I don't agree at all - I go to bed at the same time and get up roughly at the same time each day feeling much worse with less sleep, but I know I won't sleep no matter how long I stay in bed so what's the point in trying to force it?
Now as for forcing myself to stay in bed during the night thats another thing, yes I do - I am sorely tempted to get up but know it won't do me any good, my limbs need to rest too.
I don't agree at all - I go to bed at the same time and get up roughly at the same time each day feeling much worse with less sleep, but I know I won't sleep no matter how long I stay in bed so what's the point in trying to force it?
Now as for forcing myself to stay in bed during the night thats another thing, yes I do - I am sorely tempted to get up but know it won't do me any good, my limbs need to rest too.
Perhaps you could expand upon what you mean by this - your comment doesn’t follow from mine
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)
Surely you can see that we all benefit from support, advice, advocacy etc in various ways/to varying degrees.
Granted some input is more/less helpful than others but to suggest that everyone who’s ever recovered has done so completely independently is grossly mistaken. Most have the capacity for (fairly) independent recovery however, undoubtedly – part of the pitch/aim of my protocol is to help folks get themselves onto near enough optimal trajectories for recovery, mostly it's up to them to ensure the conditions are right for remission/recovery
Perhaps you’d care to substantiate that conclusion?
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)
Surely you can see that we all benefit from support, advice, advocacy etc in various ways/to varying degrees.
Granted some input is more/less helpful than others but to suggest that everyone who’s ever recovered has done so completely independently is grossly mistaken. Most have the capacity for (fairly) independent recovery however, undoubtedly – part of the pitch/aim of my protocol is to help folks get themselves onto near enough optimal trajectories for recovery, mostly it's up to them to ensure the conditions are right for remission/recovery
Perhaps you’d care to substantiate that conclusion?