Action CIND Webinar: "Why Working out Doesn’t Work" by Workwell Foundation

[Sisyphus]

That is a very good description. I don't know whether it's caused by exceeding AT, (is that proven?) but its a good description nevertheless xxx

Anecdata from myself: Absolutely not. I find the worst, longest lasting PEM has come from ‘harmless’ activities continued past the point where I began to feel exhaustion, and when I could not immediately lay down or at least recline at the beginning of it. Aerobic exercise does cause a crash, but it’s sharper, shorter and has a good recovery by day 5. I am not speaking of forced exercise, but measured, specific activity undertaken once I was in a window of recovery.

Activity I would not class as exercise is much worse. Sitting and talking in a noisy environment for some time, interspersed with some trivial walking, with clock running several hours, and not having a no-effort way to get back to bed FAST caused months long crashes. Smaller bites of the same, weeks. Slow walking past the rather low safe threshold is also likely to cause a multi-week crash.
This requires a separate thread, so that’s as much as I’ll say here.

 

[Mithriel]

ME is so complex. The Workwell findings, as I said, mirror my illness very well, but .... They are not the only thing going on, they are the consequence of whatever is going wrong for us which is on happening at a biochemical cellular level.

My worst consequence came when I improved my fitness and stamina. I felt great until one day I could not walk; the damage had been going on but the fitness masked it.

Continually doing a little too much erodes something. This could be individual cells being damaged by a broken aerobic system within themselves but enough working normally to let the organ function. Then when cells die off naturally there are not enough normal ones left and we crash or something, who knows yet.

I hope that looking at the major effects will cast light on how all the other things go wrong.

 

[Mij]

Activity I would not class as exercise is much worse. Sitting and talking in a noisy environment for some time, interspersed with some trivial walking, with clock running several hours, and not having a no-effort way to get back to bed FAST caused months long crashes. Smaller bites of the same, weeks. Slow walking past the rather low safe threshold is also likely to cause a multi-week crash.
This requires a separate thread, so that’s as much as I’ll say here.

I think this would make an interesting separate thread to explain your experiences in more detail. I'm very interested in learning different variations of PEM. I have not experienced long term slow PEM (over 4 days) because once it hits, I can no longer continue. Everything stops.

Do you have OI or autonomic dysfunction? This is a huge issue for me during PEM.

 

[DigitalDrifter]

View attachment 9453

7 days? I've had payback lasting over 12 years and counting. There needs to be acknowledgement of harm from exertion that lasts for years or even a lifetime.

 

[Seven]

I don't think their research is saying that PEM is "caused by" exceeding AT

Yes you will get PEM if you exceed your AT by certain time. When I got tested ( not
By them but same concept) I was told to avoid going over the AT and I had to focus on building the Aerobic capacity ( slowly). By avoiding going over AT you avoid relapses and damage.
So
When you get tested they tell you when your HR gets to X number and your activity takes X minutes then you have to lay down for this time so you can recover and I take
Oxygen again.

 

[Snow Leopard]

Others one might have, such as gait problems or ataxia like symptoms, are not mentioned. I am not even sure that any individual would have a consistent pattern. Each of us has our own illness.

Ataxia is quite atypical for ME or CFS and suggests other illnesses.

I don't think their research is saying that PEM is "caused by" exceeding AT but rather that patients with ME have an abnormal response to exertion which is reflected in a lowered AT and other parameters that show up on CPET, particularly on the second day. What causes those changes and the PEM itself is still an open question

Exactly.
An anerobic threshold is actually an artefact of a very specific type of exercise (ramped increase in power output) as normally humans dynamically adjust our performance to avoid pushing past this threshold for very long. The actual balance between aerobic and anerobic metabolism is based on kinetics of energy demand and oxygen supply to specific muscle fibres and is highly dynamic during normal activities. There is no magic heart rate threshold that keeping below will avoid exceeding an anerobic threshold, because our activity is typically quite dynamic.

In fact, the 2 Day CPET results also show that even under the same conditions, it can occur at lower heart rates on the 2nd day in some participants.

 

[Invisible Woman]

Don't want to go too far off topic here but

Ataxia is quite atypical for ME or CFS and suggests other illnesses.

Is it? I'm surprised. It's one of 1st the issues that became very obvious to me. So much so the (actually very helpful) physio I saw tested me for dyspraxia. On occasion I've been with groups of ME patients and we've all been walking into walls & doorways all over the place.

Note - this physio kept telling me to rest & not push my limits.

 

[NelliePledge]

Here’s an article by ME research U.K. which mentions some research on ataxia in people with ME http://www.meresearch.org.uk/walking-co-ordination/

 

[Trish]

Here’s an article by ME research U.K. which mentions some research on ataxia in people with ME http://www.meresearch.org.uk/walking-co-ordination/

Looks interesting. Might be worth a new thread.

 

[Sly Saint]

Here’s an article by ME research U.K. which mentions some research on ataxia in people with ME http://www.meresearch.org.uk/walking-co-ordination/

Many people with ME/CFS will not be surprised by these results – after all, they have lived for many years with the cognitive impairment and neurological dysfunction that underlie problems with automaticity. And established ME/CFS clinicians have long recognised these symptoms in their patients; as their Canadian Consensus Document said in 2003: “Ataxia, muscle weakness and fasciculations, loss of balance and clumsiness commonly occur. There may be an inability to automatically attune to the environment…and temporary loss of basic habituated motor programs such as walking”. Yet, the day-to-day impairments in basic functioning of people with ME/CFS remain overlooked by the wider clinical and scientific community.

eta: article links to this research paper
Physiological cost of walking in those with chronic fatigue syndrome (CFS): a case–control study
http://www.meresearch.org.uk/our-research/completed-studies/cost-of-walking/

 

[Mij]

Ataxia is quite atypical for ME or CFS and suggests other illnesses.

This is one symptom that I've had for the entire length of my illnesses (almost 30 yrs). When I returned to work for a short period after my sudden viral onset, it was ataxia that set in way before the fatigue began and later relapse. I would walk home from work like a drunk, yet I had no other symptoms (yet).

It is also a symptom that the ME specialist noted as an indication of ME, but wanted to r/o MS first.

 

[Snow Leopard]

Walking into walls is not ataxia, nor weakness due to fatigue and there other causes for balance issues and dizziness.
Ataxia is an inability to coordinate peripheral feedback to precisely control movement.

If you frequently fall while walking, cannot stand on one foot, or tandem walk, then you might have signs of ataxia. Other forms of ataxia include slurring of speech, unable to control voice volume, feeling like your head is a bobblehead, inability to perform rapidly alternating movements, judge distances/ranges of movement, intention tremor (which is a wide slow tremor around 5Hz) etc.

 

[Mij]

The Mayo Clinic lists causes of ataxia. I also have added vestibular dysfunction.

Head trauma
Stroke
Autoimmune diseases (MS etc)
Infections
Paraneoplastic syndromes
Tumor
Toxic reaction (side effect of medications)
Vitamin E, vitamin B-12 or thiamine deficiency

 

[Kitty]

View attachment 9453

Interesting – the short-term and long-term symptoms ring true for me (albeit with some additions to the short term list, e.g. swollen glands and constant trips to the toilet), but I'd only get the immediate symptoms if I'd really, really overdone it.

If I've only done enough activity to cause short-term PEM, I feel great for the whole of that day. It's one of the reasons I had several major relapses before I was eventually diagnosed, as it feels as if the activity is doing me good. It's probably also one of the reasons the BPS brigade have been so committed to exercise as a 'treatment', as people at the milder end of the spectrum could well have fed back that they felt okay immediately after a session.

 

[Invisible Woman]

Ataxia is an inability to coordinate peripheral feedback to precisely control movement.

This happens to me during PEM.

Other forms of ataxia include slurring of speech, unable to control voice volume, feeling like your head is a bobblehead, inability to perform rapidly alternating movements, judge distances/ranges of movement, intention tremor (which is a wide slow tremor around 5Hz) etc.

All of those, except perhaps intention tremor. When I used to still practise very gentle yoga I started to a tremor and loss of fine tune control were early warning symptoms.

The bobble head and distance judging were one of the reasons I stopped going to busy places - especially when kids were running about. I couldn't judge the distances to dodge, then I'd struggle to dodge or angle my body so as not to bash into someone. My head would feel weird and I'd feel like I was going to fall over. The issue wasn't muscle weakness, although that can happen at different times.

 

[TiredSam]

The diagram above posted by Strategist is interesting in its suggestion that there are early signs of overdoing energy limits that could be used as a warning. Have others seen those signs?

Yes, the diagram is a very accurate description for me. I have learnt to identify and heed the warnings (I know I'm lucky to have warnings before it's too late). My ME started as described under "long term" for many months. When I realised what was going on and adapted, I had "short term" symptoms for 2-3 years. So in my 2nd year of ME I counted 138 days with headaches. For the last year or two I feel normal most of the time, and only have "immediate" symptoms, which I am able to heed so they only occasionally become "short term". I lost 32 days to headaches last year, and it's been a straight line down from 138 to 32 over the last 5 years.

ETA: It's difficult to judge whether I'm getting better at a glacial pace, or whether I've improved because I've adapted, and I'm just as ill as at the start. Subjectively I don't think my ME is as bad as it was, and of course I hope it will continue to improve, but I'm also well aware that I could be kidding myself. When I've had a period of feeling well and then, full of hope and optimism, I try to do too much, it always ends with a kick in the teeth and a reminder to know my place.

 

[Sisyphus]

eta: article links to this research paper
Physiological cost of walking in those with chronic fatigue syndrome (CFS): a case–control study
http://www.meresearch.org.uk/our-research/completed-studies/cost-of-walking/

OK, I gotta jump in with an anecdata, but one that I’ve experienced overandoverandover. It’s consistent and repeatable:
Walking is like eating Kryponite dust, while standing in one place is like breathing it. It was more harmful to walk a specific distance than it was to run exactly the same route. However, running turns out to have caused a different, confounding problem, too much to interject here.
The crash from walking can be substantial - weeks long if one gets caught away from home and without a means to immediately quit and get ride back when exhaustion hits. There’s no benefit, no energizing effect from walking. Certain specific types of aerobic exercise in tightly regulated amounts had an energizing effect, but also a significant hidden hazard.

 

[Medfeb]

Yes, the diagram is a very accurate description for me. I have learnt to identify and heed the warnings (I know I'm lucky to have warnings before it's too late). My ME started as described under "long term" for many months. When I realised what was going on and adapted, I had "short term" symptoms for 2-3 years. So in my 2nd year of ME I counted 138 days with headaches. For the last year or two I feel normal most of the time, and only have "immediate" symptoms, which I am able to heed so they only occasionally become "short term". I lost 32 days to headaches last year, and it's been a straight line down from 138 to 32 over the last 5 years.

ETA: It's difficult to judge whether I'm getting better at a glacial pace, or whether I've improved because I've adapted, and I'm just as ill as at the start. Subjectively I don't think my ME is as bad as it was, and of course I hope it will continue to improve, but I'm also well aware that I could be kidding myself. When I've had a period of feeling well and then, full of hope and optimism, I try to do too much, it always ends with a kick in the teeth and a reminder to know my place.

@TiredSam - thank you. Much appreciated. This was very helpful.

Do you see this pattern of response from both cognitive and physical overexertion? Or is it different or not initially detectable from cognitive overexertion?

 

[TiredSam]

Do you see this pattern of response from both cognitive and physical overexertion? Or is it different or not initially detectable from cognitive overexertion?

I only have symptoms from physical overexertion. One of my symptoms is brain fog, cognitive issues like being unable to concentrate, remember, find words, follow a conversation etc. But this only happens as a result of physical overexertion.

I can play chess for hours without symptoms, or read, or hold a 3-hour conversation (I've just been teaching 1-2-1 for 3 hours this afternoon). I'm fairly tired and on the edge of experiencing symptoms now, but that's from the effort of having to sit up straight in a chair for 3 hours.

 

[ahimsa]

I only have symptoms from physical overexertion. One of my symptoms is brain fog, cognitive issues like being unable to concentrate, remember, find words, follow a conversation etc. But this only happens as a result of physical overexertion.

I can play chess for hours without symptoms, or read, or hold a 3-hour conversation (I've just been teaching 1-2-1 for 3 hours this afternoon). I'm fairly tired and on the edge of experiencing symptoms now, but that's from the effort of having to sit up straight in a chair for 3 hours.

I'm similar in that, for the most part, my symptoms come from physical overexertion. Not too many symptoms (but not zero) come from cognitive exertion.

But there's one major difference.

I can go for a pretty long time without feeling any overexertion from cognitive tasks IF it is a solitary task with no need to communicate in any way. For example, reading a book, or doing crossword puzzles, usually does not cause payback. And back when I was still struggling to work it did not seem like the coding part of my job was any harder than before. The problem was all the symptoms from ME and Orthostatic Intolerance plus the post-exertional crashes after trying to work a full day.

But if I have to communicate (talk on the phone, talk in person - especially explaining or answering questions, typing emails) then it is more likely to cause overexertion. The most difficult category is any type of real-time communication. Even enjoyable, social interaction is still cognitively draining. Writing an email, or creating a forum post, also takes a toll but it's much easier.

In real time, even when my thought process seems fairly straightforward and simple, I have so much trouble with word finding (concrete nouns seem to be the worst) and making coherent sentences.

To give one example, it's actually harder for me to sit in a car and give someone directions than it is for me to drive to that place by myself. By the time I can form a sentence saying, "Turn right at <landmark>" we have already passed where we need to turn. I know where to turn. I probably even have the full map in my head. But I can only point and can't say the name of the street or landmark or whatever.

I have no idea whether this is true for anyone else with ME but I thought I'd throw it out there. I find it fascinating that it's the I/O (input/output) parts of cognitive tasks, not the "computing" parts, that are most challenging for me. I could never teach a class.

I'm naturally more of an extrovert but I have turned into more of an introvert just because my brain needs so much more rest time.