Professor Julia Newton: Research Presentation: Transcript and Video: November 2012

[MeSci]

I guess - probably incorrectly and I'm happy to be corrected of course - that if unable to gain sufficient oxygen because of disability, the supply can be supplemented in whole or in part by administration of oxygen itself direct. I believe some find Oxygen chambers and suchlike useful in this regard.

Generally though, I think it is pretty established that exercise is a very necessary part of the body's overall needs as is oxygen.

I kind of like the dynamo analogy anyway

Have edited some of my post above to improve on understanding I hope.

Some people do report benefits from oxygen chambers. Maybe even changing one's breathing technique can help. I often find that I am inadvertently holding my breath, especially if I am tense or anxious.

But I wonder whether reducing acidity in the tissues can also increase oxygen supply. I have been trying to find info on this but keep finding pages that talk of low oxygen levels causing acidosis, not the other way around. My brain isn't up to taking in a great deal of chemistry!

This page is interesting - an article on Biochemistry of exercise-induced metabolic acidosis:

http://ajpregu.physiology.org/content/287/3/R502.full

My thinking (and chemistry is NOT my strong subject) is that, as acidosis involves an excess of free protons - H+ ions - and these can combine with oxygen to form H2O, it/they could reduce the supply of available oxygen. (Maybe they could also lead to polyuria by producing an excess of H2O? Maybe this is rubbish!)

 

[Firestormm]

But I wonder whether reducing acidity in the tissues can also increase oxygen supply. I have been trying to find info on this but keep finding pages that talk of low oxygen levels causing acidosis, not the other way around. My brain isn't up to taking in a great deal of chemistry!

Check out the interview with Julia by Clarke and the comments from him and Bob I think relating to ATP, Oxygen and excess acid that followed. Might be of interest.

We were talking about 'graded' earlier above. Came across this article this morning, following a read of Robert's letter that has been published. Might be of further interest. This is clearly 'increasing' exercise/activity in a tailoured and manageable way. Haven't finished reading it yet though...

...Over the course of five years, Ms Bavinton successfully used GET in a series of one-to-one sessions with Mr Stone. She set a new baseline, restructured his activity levels and provided ongoing support that enabled him to make a remarkable recovery.
Gradual increase in exercise

‘The first thing was just sitting up, because I was lying down all the time,’ explains Mr Stone.
‘So I started having periods of sitting up, then standing up. I went from doing virtually nothing to doing very small things. Then, eventually, she got me walking outside again and I started going for three-minute walks.’

There were many setbacks along the way but gradually Mr Stone built up his activity levels to the point where he was able to take 45-minute walks five times a week.

By 2008 he had made such significant improvements that he felt confident enough to take a week-long holiday in Spain.

Now, ten years after developing CFS, he has a new lease of life.

He runs an independent disability consultancy, practises yoga daily and has joined a dance company. His recovery has also allowed him to pursue a long-held interest in creative writing and he’s recently completed his first novel...

Isn't it also strange, this word 'recovery' and it's usage? I guess with the benefit of hindsight it appears a 'remarkable recovery' from a certain perspective i.e. the authors or even maybe Mr Stone's but I bet it was bloody hard going. And 5 years commitment from a single physio? Jeepers - even in Cornwall they can only afford a set number of sessions per patient - nothing like this kind of one-to-one...

Ms McAleese believes the key to the therapy’s success is the selection of one simple exercise, which can be repeated daily, measured and increased by objective increments and kept within defined ‘safe’ parameters – in line with the research findings as set out in the NICE guidelines and the PACE trial.

‘I could feel my fitness levels increasing and my daily activities getting easier, and I could relate this directly to the objective measures recorded during my exercise sessions.
I had confidence from knowing that I was following the evidence base for GET.’

She adds that she would highly recommend the GET approach to anyone suffering from chronic fatigue. However, she warns that people need to have to have realistic expectations.

‘It is a long-term investment, not a quick fix, and it takes commitment from the patient and strong direction from the therapist. I may have a few more years of recovery to go.
And I still have help around the house with housework and the garden. That allows me to do my exercise – so I still have to balance things.’

[Ms. McClure Senior Physio Barts NHS Trust]
‘It might seem counterintuitive to offer exercise therapy to patients who are struggling with post-exertional fatigue, but GET is quite different from the type of unplanned and excessive activities that tend to make patients feel worse – in that it is carefully graded and structured,’

 

[biophile]

Hi Firestormm. You are correct that terminology can be ambiguous. Bob helped out with some of the definitions. Activity is any action or movement or behaviour (mental or physical). Exertion is effort to conduct activities in general. Exercise is physical routines to improve fitness or health.

My original post said "exercise for the sake of exercise", which I changed to "exercise for the sake of activity". But I do regard exercise as a specific and separate type of activity compared to day-to-day living activities. I do think "activity management" is essential but very personal and should be autonomous, and it is good to do as much as practical without worsening overall condition to avoid the consequences of deconditioning, but it should not come at the cost of more important activities. I doubt most long-term patients can go beyond the illness-imposed limitations, so do not feel bad if that is where you still at or if it is difficult to fight the urge to do more, it does get more familiar and acceptable with time.

In my own experience, which was frequently acquired and learnt the hard way, there is simply no escaping the activity ceiling. It may vary in relation to current illness status/severity, but it is there and no amount of behavioural trickery or engaging in different types of exercise fads can evade it. When flirting with or pushing through the activity ceiling, which is often unavoidable due to daily life and other demands or interests (no one is perfect), sooner or later you have to pay for it, and if you do not pay now you will pay even more later.

Trying to trick the activity ceiling with smaller increases over longer periods just ends up delaying the inevitable and even causing a more protracted crash. The body simply does not become accustomed to it as expected and claimed in the GET model. Recently I have observed that some seemingly "spontaneous" crashes could actually be explained when accounting for total activity levels over the last several weeks or even last few months or more, the activity ceiling applies much further back in time than obvious post-exertional symptoms would indicate.

When violating the activity ceiling, which for me is usually more like a thick rubber band than a strict glass roof, if you do not learn to recognise and heed the numerous subtle and overt warnings of a pending crash (pay it back with decreased activity), sooner or later the Pied Piper will come and collect even more, sometimes suddenly.

The question remains, how does a patient know their activity ceiling if they never push the boundaries? It is a myth that patients are generally too scared to test the waters of their own perceived activity ceiling. Testing the waters occurs naturally when living life, often there are unexpected demands, and ongoing temptations to do more.

I have no problem with patients carefully testing the waters of their own limits, but I have a problem with patients being fooled into thinking that by default there is nothing really preventing them from a full recovery with graded activity or exercise. It is deceptive, offers false hope, unscientific, and unethical. I starting writing more about how this all relates to GET but maybe I will post it later. There is no objective evidence that GET can overcome this activity ceiling as claimed or alluded to, the limited evidence available even suggests that it does not.

 

[biophile]

I am not exactly impressed with anecdotes of someone making a "remarkable recovery" after several years of GET. How do we know GET helped at all? Could have been a natural but slow recovery.

http://www.csp.org.uk/frontline/article/making-grade

I want to believe, and maybe some people are benefiting, but those letters read like marketing testimonials to me.

As for some of the statements:

Surprisingly, despite many similar success stories and the backing of strong clinical evidence, the approach still struggles to gain the clinical recognition its supporters say it deserves.

Unsurprisingly, when credible evidence of objective improvements is finally published without spin after decades of such claims, perhaps it will then gain the wider recognition that supporters think it deserves?

The results caused some controversy in the CFS support community, which has long held APT in high regard.

‘It confirmed that pacing doesn’t work but that GET and CBT are moderately effective.’

APT is only one type of pacing. I never heard much about it until I came across the PACE Trial protocol. Contrary to claims, the trial did not debunk pacing in general. You could guarantee that, if the PACE Trial tested a very specific form of CBT/GET and claimed the results debunked all CBT/GET for CFS, the proponents of that would complain too.

‘The PACE trial was very significant because it helped us to uncover whether we should be telling patients to hold back or encouraging them to gently tests their limits,’ says Ms Bavinton.

When safety was defined as it is OK to experience major symptom exacerbations for less than 4 weeks at a time, it was found "safe" to "[encourage] them to gently tests their limits". I think testing the waters is a natural consequence of daily living, but the PACE Trial however provided no objective evidence that such testing was substantially successful.

I had confidence from knowing that I was following the evidence base for GET.

I have confidence from knowing that I have explored the evidence base thoroughly for myself and found it wanting, helping to explain why GET was not helpful to me and many others despite the hype.

 

[MeSci]

Hi Firestormm. You are correct that terminology can be ambiguous. Bob helped out with some of the definitions. Activity is any action or movement or behaviour (mental or physical). Exertion is effort to conduct activities in general. Exercise is physical routines to improve fitness or health.

My original post said "exercise for the sake of exercise", which I changed to "exercise for the sake of activity". But I do regard exercise as a specific and separate type of activity compared to day-to-day living activities. I do think "activity management" is essential but very personal and should be autonomous, and it is good to do as much as practical without worsening overall condition to avoid the consequences of deconditioning, but it should not come at the cost of more important activities. I doubt most long-term patients can go beyond the illness-imposed limitations, so do not feel bad if that is where you still at or if it is difficult to fight the urge to do more, it does get more familiar and acceptable with time.

In my own experience, which was frequently acquired and learnt the hard way, there is simply no escaping the activity ceiling. It may vary in relation to current illness status/severity, but it is there and no amount of behavioural trickery or engaging in different types of exercise fads can evade it. When flirting with or pushing through the activity ceiling, which is often unavoidable due to daily life and other demands or interests (no one is perfect), sooner or later you have to pay for it, and if you do not pay now you will pay even more later.

Trying to trick the activity ceiling with smaller increases over longer periods just ends up delaying the inevitable and even causing a more protracted crash. The body simply does not become accustomed to it as expected and claimed in the GET model. Recently I have observed that some seemingly "spontaneous" crashes could actually be explained when accounting for total activity levels over the last several weeks or even last few months or more, the activity ceiling applies much further back in time than obvious post-exertional symptoms would indicate.

When violating the activity ceiling, which for me is usually more like a thick rubber band than a strict glass roof, if you do not learn to recognise and heed the numerous subtle and overt warnings of a pending crash (pay it back with decreased activity), sooner or later the Pied Piper will come and collect even more, sometimes suddenly.

The question remains, how does a patient know their activity ceiling if they never push the boundaries? It is a myth that patients are generally too scared to test the waters of their own perceived activity ceiling. Testing the waters occurs naturally when living life, often there are unexpected demands, and ongoing temptations to do more.

I have no problem with patients carefully testing the waters of their own limits, but I have a problem with patients being fooled into thinking that by default there is nothing really preventing them from a full recovery with graded activity or exercise. It is deceptive, offers false hope, unscientific, and unethical. I starting writing more about how this all relates to GET but maybe I will post it later. There is no objective evidence that GET can overcome this activity ceiling as claimed or alluded to, the limited evidence available even suggests that it does not.

I want to like this 100 times! It is completely consistent with my experience and what I have learned from elsewhere.

It's particularly interesting that you state something I have suspected from my own experience, essentially that exertion when feeling OK a day or two after previous exertion just delays the adverse effects. I find that it takes me about 3 days to a week to recover from one fairly-strenuous day. Sometimes I am tempted to do moderately-strenuous activity (productive self-employed work, not 'exercise' for its own sake) before the PEM has run its course, and again I feel OK the next day, and maybe the day after. Maybe sometimes the additional activity does seem to trick the body, and you continue to feel OK and therefore think you are recovering and can do even more.

Then reality hits...

The exertion may not have to be that great.

On the other hand, I do get stiff when I have been inactive for a few hours, and it does help to get up and walk about, etc. I guess this just flexes the muscle fibres and gets the circulation moving.

But the only way to get your mitochondria to recharge when you have ME is to rest them.

 

[MeSci]

I am not exactly impressed with anecdotes of someone making a "remarkable recovery" after several years of GET. How do we know GET helped at all? Could have been a natural but slow recovery.

http://www.csp.org.uk/frontline/article/making-grade

I want to believe, and maybe some people are benefiting, but those letters read like marketing testimonials to me.

That is one of the major problems for us. We desperately want to believe that SOMETHING will help us, and as a result we trust people whom we should not trust. I have read so many stories of people on another forum who have done this that I have stopped using the forum as it was getting too distressing to see the inevitable consequences. Even severely-affected people who have been angrily dismissing all the psych stuff have then fallen for someone else peddling it in a subtly different way, and insisted to the rest of us that 'this is different' - and it clearly isn't. I myself have occasionally doubted my experience-based beliefs, and the doubts creep in even now. It can be hard to dispel them, because we so want to be able to live normal lives, and have to use enormous amounts of self-discipline to resist doing too much.

APT is only one type of pacing. I never heard much about it until I came across the PACE Trial protocol. Contrary to claims, the trial did not debunk pacing in general. You could guarantee that, if the PACE Trial tested a very specific form of CBT/GET and claimed the results debunked all CBT/GET for CFS, the proponents of that would complain too.

I have a problem with the term 'pacing therapy' as in APT. To me, pacing is a vital management tool, not a therapy. I do not believe that it can bring about improvement on its own. It can aid recovery from the last exacerbation, and prevent further ones, as long as it is practised continually. It can complement effective therapies and other management tools.

I have confidence from knowing that I have explored the evidence base thoroughly for myself and found it wanting, helping to explain why GET was not helpful to me and many others despite the hype.

Another 100 likes!

 

[Firestormm]

Morning

Thanks very much indeed, Bio. Appreciate your thoughts.

Hi Firestormm. You are correct that terminology can be ambiguous. Bob helped out with some of the definitions. Activity is any action or movement or behaviour (mental or physical). Exertion is effort to conduct activities in general. Exercise is physical routines to improve fitness or health.

Makes sense. I would perhaps say 'Exercise is a specific physical routine designed to improve fitness or heath' but that's just me and I see you've covered this in your following paragraph:

My original post said "exercise for the sake of exercise", which I changed to "exercise for the sake of activity". But I do regard exercise as a specific and separate type of activity compared to day-to-day living activities.

Just pondering if, for a disabled person, exercise should assume a greater priority in terms of one's list of activities? Sacrificing something else for the sake of ensuring - where possible - a walk each day or couple of days etc. I would I think, for example, if finances permitted, employ a cleaner in order for me to be better able to get some exercise. This could mean I might exercise more often - my list of 'things I must do' would diminish etc. Then again - and knowing me - I would probably use the additional 'freedom' to work more. But that's just me. However, if I could employ someone to lend a hand - I would consider that a part of 'managing my condition and my life'.

I do think "activity management" is essential but very personal and should be autonomous, and it is good to do as much as practical without worsening overall condition to avoid the consequences of deconditioning, but it should not come at the cost of more important activities.

Not sure - in practice - quite how 'autonomous' daily life can possibly be, but I take you point. Depends on your responsibilities. I simply cannot imagine having a family and dealing with all of that added responsibility on top of all of this at the moment - but others have to. I think any activity management has to remain elastic but we all have different priorities and needs.

'Life' is also not static after-all - but it's the methods, the techniques, and 'tricks' if you like, that are important to learn to be able to try and cope with what we need to cope with; and yeah I suspect we 'old-timers' have learned in large part, the hard way: but I know I have picked up some bad habits. I don't think it unhelpful to revisit my education and to learn from other people about how they manage.

I doubt most long-term patients can go beyond the illness-imposed limitations, so do not feel bad if that is where you still at or if it is difficult to fight the urge to do more, it does get more familiar and acceptable with time.

Thanks. What frustrates me is that there is no 'limitation' i.e. it is not a solid ceiling. It is not tangible. I cannot get a bead on 'this activity, for this duration, expending this much effort, will result in X' and 'combined with this activity.... will result in X'. I don't think any of us can - not looking at 'the illness' in isolation. We are all different. We all have different things we need to do, want to do, and can do repeatedly and reliably, or as a 'one-off' significant event.

And I am not certain how this can all be related to 'illness severity' or 'illness-imposed limitations'. Or even that it should: although when making benefit decisions and even completing scientific experiments someone somewhere has to draw a line; and that's where as an individual I have acceptance problems: I cannot accept their decision where to draw that line let alone interpret what it means and how it is applied.

In my own experience, which was frequently acquired and learnt the hard way, there is simply no escaping the activity ceiling. It may vary in relation to current illness status/severity, but it is there and no amount of behavioural trickery or engaging in different types of exercise fads can evade it. When flirting with or pushing through the activity ceiling, which is often unavoidable due to daily life and other demands or interests (no one is perfect), sooner or later you have to pay for it, and if you do not pay now you will pay even more later.

Part of managing or trying to manage my life now includes catering for appropriate and necessary rest. The Management course I am on now - is all about including rest in one's daily schedule. And the level of rest required compared to the effort expended is such that it renders me unusual. Disabled.

And I would agree - even with this 'pacing' approach; that fluctuating 'ceiling' is still ever-present but that it usually let's me know. I will 'hit a brick wall' the trick however is trying to anticipate the wall and then figure out what to do next. And I am still finding that if I stop, I stop i.e. if I rest I find it exceptionally hard to get back into it.

So my 'activity window' that occurs most frequently in the mornings, and last for about 4 hours I suppose, gets packed! I shove as much as I can into that 'window' and then flop for the rest of the day. But yes, of course, 'Life' frequently interferes. I cannot operate in a bubble.

So demands are made that need satisfying which means I need to learn how to try and work that window if I can. In some respects this is already working. It's had to. Moving from parents taking care of me to living again on my own - has meant it needed to. Looking for the missing 'purpose' in my life, and finding it with e.g. some voluntary work, means that I also need to try and make my 4 hours occur at points throughout the day (and night sometimes). So am I 'doing more' overall than when I was living with my parents? Yes. I am. I have had to.

I still get help, sure. Parent's in and out. Home care. Certain tasks are taken away from me. New tasks have been taken on by me. I still have days when I am wiped out - but this isn't always through previous 'over-activity'. I just get like that - that's my ME (although it could also be triggered by other things: a cold, upset tum etc. we ain't immune to life's events), as is the degree of effort required by me to do the tasks that I do do.

I retain my intelligence - but my ability to apply that intelligence has diminished: and yet I do need to apply it - so how can I do this? I retain my knowledge of how to complete tasks but my ability to complete them has diminished: and yet they need to be done - so how do I do them without exacerbating my symptoms if I can? And more successfully than I have done in the past? (Rhetorical questions)

Trying to trick the activity ceiling with smaller increases over longer periods just ends up delaying the inevitable and even causing a more protracted crash. The body simply does not become accustomed to it as expected and claimed in the GET model. Recently I have observed that some seemingly "spontaneous" crashes could actually be explained when accounting for total activity levels over the last several weeks or even last few months or more, the activity ceiling applies much further back in time than obvious post-exertional symptoms would indicate.

I do think that looking back I have, overall, managed to 'increase' my activity level. I am doing more things and - generally - more successfully. Why? I do more now to lessen the impact of my health condition on my life - to accommodate my poor health - than I did before and am able to live on my own. Maybe the why isn't as important. The fact that is it hard - bloody hard - to accomplish even the most 'menial' task - like sometimes reading - is all the reminder I need that I have a disability.

If I am feeling worse and unable to accomplish or even attempt something that is a normal routine for me: then I too can and do look back and think - or someone will say - 'well you did do X the other day'. To what extent X has influenced my current state I honestly cannot say. I think more can be involved than 'over-activity' alone. For example: if I read something - a novel - one day, it may require more effort on my part and result in less success (duration, understanding, enjoyment); than I gain on the next day when reading that same novel (once I have revisited what I have now forgotten!). Why is that? Who knows...

When violating the activity ceiling, which for me is usually more like a thick rubber band than a strict glass roof, if you do not learn to recognise and heed the numerous subtle and overt warnings of a pending crash (pay it back with decreased activity), sooner or later the Pied Piper will come and collect even more, sometimes suddenly.

I like this analogy With me everything gets harder - concentration, understanding, movement, muscles, pain, and stimulants get more pronounced - noise, smells, sounds, etc. etc. - the 'fatigue' descends as a cloud. Indeed I tend to look at 'it' as a cloud because I can push into it - or against it - parts of it - all of it; but never through it. If it's hitting my mental function especially hard - then I can switch to an activity like taking a walk; if it's hitting all of me and I feel I can't accommodate then I'll invariably rest. I can't however, and am not sure it's possible, to anticipate to what degree an activity will exacerbate something and plan my day accordingly in advance.

The question remains, how does a patient know their activity ceiling if they never push the boundaries? It is a myth that patients are generally too scared to test the waters of their own perceived activity ceiling. Testing the waters occurs naturally when living life, often there are unexpected demands, and ongoing temptations to do more.

Absolutely It is a myth. Bastards! It takes a lot of inner-strength to keep on trucking, to keep testing and probing, and returning to test again. And sometimes 'new' things are possible: but again I do not yet know how we can say this improved ability to accomplish X can relate to improved ME.

I have no problem with patients carefully testing the waters of their own limits, but I have a problem with patients being fooled into thinking that by default there is nothing really preventing them from a full recovery with graded activity or exercise. It is deceptive, offers false hope, unscientific, and unethical. I starting writing more about how this all relates to GET but maybe I will post it later. There is no objective evidence that GET can overcome this activity ceiling as claimed or alluded to, the limited evidence available even suggests that it does not.

I agree - again Not that anyone has ever said to me that GET or GAM does lead to recovery or even can lead to recovery. However, it has certainly been implied - in the media and by PACE. We only hear about the positives and never the negatives. Even the PACE headlines of (from memory) 40% failed to mention the 60% and failed to focus on how important this improvement was overall to the patient and what it lead to them being able to escape from e.g. benefit dependence.

 

[Firestormm]

Hi Firestormm. You are correct that terminology can be ambiguous....Exercise is physical routines to improve fitness or health...

Me again. I am currently engaged with some work revisiting the NICE Guideline and thought you would appreciate the definition that follows:

Glossary of Terms:
Exercise:

Any form of physical activity that uses the major muscle groups of the body. Activities of daily living (for example, brushing hair or getting dressed), sitting up in bed and walking about are all exercise in the context of this guideline.

Page 13

Throws an interesting and yet another complexion on the matter - doesn't it? My activities of 'daily living' are therefore forms of exercise. Much happier now

Needless to say, we could go through all the terms in that Glossary and discuss how they are interpreted in practice.

I perceive PACE as applying, in my own mind, to the exercise that was carried out. To that environment; and not to all forms and applications of the theory, and not all of the time.

It was an experiment and I cannot see how it can be applied to daily life. PACE was PACE. The names afforded to the techniques - Activity Management, CBT, GET and Pacing for example; well when used as part of say this Management Course I am attending - I simply hope to take something away from it.

Could be that it's only a reinforcement that what I am doing is as much and as good as I can hope to. Actually I'd be disappointed if that was the case rather than pleased. But maybe not. I hope I can pick up something. Even if it is getting to know how these principles are being taught and meeting other patients and seeing with my own eyes how they manage their own lives and cope with all the crap.

 

[MeSci]

I can't however, and am not sure it's possible, to anticipate to what degree an activity will exacerbate something and plan my day accordingly in advance.

It is indeed virtually impossible to get it exactly right without some kind of physiological monitor to see what is going on in the body. I think it will be possible one day, when enough is known about the biochemical and other physiological correlates of ME.

Something like this:

http://www.washingtontimes.com/news/2013/mar/24/implanted-blood-monitor-can-signal-heart-attack-sm/

could be the answer.

In the meantime, some people with ME report that they can avoid overexertion by monitoring their heart rate and resting when it reaches a certain speed.

Even the PACE headlines of (from memory) 40% failed to mention the 60% and failed to focus on how important this improvement was overall to the patient and what it lead to them being able to escape from e.g. benefit dependence.

I don't think anyone was able to come off benefits as a result of the PACE study, and nor did anyone experience improvements such as being able to return to full-time education, but I may have misremembered. The info is probably on this site.

 

[MeSci]

By the way Firestormm you do know that mental activity/stress can have the same effect as physical activity, don't you? It took me a while to realise this. It could be through the same mechanism proposed by some re physical activity - excessive lactate/lactic acid, i.e. hyperlactaemia.

 

[Firestormm]

By the way Firestormm you do know that mental activity/stress can have the same effect as physical activity, don't you? It took me a while to realise this. It could be through the same mechanism proposed by some re physical activity - excessive lactate/lactic acid, i.e. hyperlactaemia.

Indeed I do. In fact it is this aspect that I find the most disabling and f******* annoying. I can live in a wheelchair - I don't care - but my brain function. I can't handle feeling it worsen. And it has. Today compared to 10 years ago. 5 years ago when I was last working. So confused and kerfuddled.

They're trying to get me a referral because they aren't convinced this can be put down to ME completely; but I think they will probably conclude - post-referral - it can be. This far into it it is hard for them to see how things have worsened without anything tangible to link any deterioration to.

If you measure intelligence - I'd probably do all right and come out with a normal score - but it's harder for them to measure the other stuff and to link it to X. Anyway, they are going to try. We'll see where it goes.

It's like I was saying, if the deterioration had just happened overnight - it wouldn't be so bad. Must be like Alzheimer's patients feel I suppose. Until you are completely - or extremely noticeably - bad; you don't get the full support. Assuming there is any of course.

I could be going through the process (whatever that is) just to find there's nothing they can do anyway!

 

[biophile]

Thanks for the 200 virtual likes, MeSci!

Yes, there certainly is an additional vulnerability period after the obvious post-exertional symptoms subside. Continuing at the same level of activity as encouraged by GET is insane. I have to reduce activity during significant relapses or crashes. Rest and naps are good at the appropriate times and a few days of rest is not going to cause significant deconditioning. During a bad phase I still do as much as I can but within increased limitations even if that means moving around briefly now and then. Often it is good to just rest up, but I find it difficult to stay absolutely still for hours at a time. I also find that forced rest due to increased symptoms can encourage a relatively slightly good phase once recovered.

Good point about wanting to believe out of desperation. Years ago I found mind over body ideology very empowering, but in the end it was a damaging illusion. I made the mistake of using "pushing through symptoms" as a management strategy, and paid dearly. I had to continually downgrade expectations and efforts until basically I realized it was just wishful thinking and there was no way around the illness imposed limitations, only adapting or maximising what I had.

Yes, creeping doubts about one's beliefs and experiences is natural when often faced with alternatives. During somewhat better phrases of physical health the supposed psychological defects I wondered I had in relation to illness (e.g. fear-avoidance) just seem to disappear. It does also require enormous amounts of self-discipline to resists doing too much. I made the mistake in the earlier stages of thinking that ignoring and pushing through symptoms was the answer.

I agree that pacing is a management tool rather than a therapy. It would only be a "therapy" if ME/CFS was defined as an over-exertion illness per se, which it is not. I see pacing as the tool to bring oneself back to the baseline or at least an optimal balance between activity and rest which means in the real world some reasonable or practical tolerance of symptoms. I do not appreciate how GET proponents engage in a false dichotomy by positioning GET as a reasonable tolerance of symptoms vs pacing as needlessly giving into all symptoms and completely avoiding any exacebrations.

Earlier I said "To be frank, I found that resistance-based exercise is just more false hope which wastes precious capacity."

I have been meaning to do a blog using notes I wrote down a few years ago when I did a self-monitored gradual resistance training program after reading about how it supposedly avoids the activity ceiling due to being short bursts of anaerobic exercise. Over time I was able to slightly increase muscle tone and strength and number of repetitions, but it came at the cost of symptoms and eventually function. PEM and relapses were not DOMS as claimed by GET proponents.

It is possible I progressed too quickly, but repeatedly lowering the amount done to a previous level did not really help and eventually I was back to square one but needed months to get over it properly. Another issue is practicality, at some point the limited amount seems pointless without special benefits. Suppose I could tolerate 8 repetitions of a weighted muscle movement once a week for each muscle group. So what? Is that really going to significantly improve my daily function and quality of life? Not really. What will it do that regular chores and hobbies do not? Nothing much at all.

I was raised on the idea that exercise is good. It has taken me years to realize and accept that exercise for the sake of exercise is simply unwise and only ever brought eventual failure. Now I just focus on other more important activities. If I die earlier because of decades of reduced activity, well, that is just a practical consequences of making the most of it.