Michael Sharpe skewered by @JohntheJack on Twitter

Jenny TipsforME said:
ME would be the epitome of Energy Limiting Chronic Illness in that within our energy envelope we don’t necessarily feel fatigue (it is possible to be fatigue free as a sensation). When we step outside of the envelope we feel terrible. Although this is the result of activity the experience isn’t necessarily the feeling of fatigue (pain, sensory overload, flu like symptoms, migraines etc and can include exhaustion).
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When this happened to me for two months it was a surprise. No energy, but no fatigue. Its an eye opener.
 
If I pace well I avoid fatigue as a sensation. Unfortunately my self control lets me down and I end up spending a lot of time right on the edge of my energy envelope (at the point symptoms are increasing but not going into a full crash). I’m trying to be more disciplined but it’s mind bendingly boring :(
 
As a lay person to me "exercise intolerance" sounds like a term people (me included once upon a time probably) will apply to folk who just can't be arsed to exercise. 'Intolerance' is a very subjective word, and colloquially can simply mean "can't be arsed".

The post exertion thing is also a problem. I'm just not a very fit person (not got ME) and if I tried to run a mile even, I would need an oxygen tent and feel like total sh*t. So the innocently uninformed would understandably think PEM to be the same with a fancy name.

It's not just that PwME feel like crap after exertion. It's the fact that they feel so much worse than even an unfit person would afterwards, and potentially delayed onset and prolonged duration compared to an unfit person. Personally I think it's related to the energy recovery mechanism being so badly impaired, and the physical consequences of trying to keep the person's body going when there is even less to spare whilst that is going on; charging mechanisms themselves consume energy, and if the energy is not there? ...
 
Jenny TipsforME said:
Something we’ve been trying on for size is the term Energy Limiting Chronic Illness. The concept comes from trying to find a non niche alternative to the term Spoonie.
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Don’t most illnesses limit energy to some extent? For me, it’s always been more about inability to recover. It would be much easier if it was just about limited energy and one could push oneself to one’s limit every day. At least part of the problem seems to be the abnormal response to pushing oneself – that the safe limit (or envelope) is some way short of the limit imposed by the available energy. My limited understanding is that this is what distinguishes ME fatigue from the type of fatigue experienced in many other chronic conditions such as MS.
When we step outside of the envelope we feel terrible. Although this is the result of activity the experience isn’t necessarily the feeling of fatigue (pain, sensory overload, flu like symptoms, migraines etc and can include exhaustion).
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I understand that this is many people’s experience but it is also important to recognise that many people feel terrible the whole time. They feel worse if they step outside their envelope but they get little or no respite staying within it. I desperately wish I could feel more comfortable by doing less – despite my constant frustration at not being able to do more. And even if I stay within my envelope I can deteriorate for no apparent reason.
 
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alex3619 said:
Activity intolerance is one I have not seen much about.
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no me neither but when I look at that definition
NelliePledge said:
activity intolerance a nursing diagnosis accepted by the North American Nursing Diagnosis Association, defined as a state in which a person has insufficient physiological or psychological energy to endure or complete necessary or desired daily activities. Causes include generalized weakness, sedentary lifestyle, imbalance between oxygen supply and demand, and bed rest or immobility.
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am I wrong in seeing depression as the underlying agenda (apart from the oxygen supply/demand point)
 
Robert 1973 said:
For me, it’s always been more about inability to recover
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Very much so, when I observe my wife. It's like a knackered rechargable battery that a) Cannot deliver the current it is supposed to, b) cannot hold anything like the charge it is supposed to, and c) takes much longer to charge to that much lower level, than a good battery would take to fully charge. And added to that the charger may also be screwed. Yet the system has no choice but to still draw current from this messed up battery that is trying to recharge, because staying alive requires energy.
 
My twopeneth

I don’t think PEM is a great description and I don’t really know why we have to keep it as a term, as long as it can be replaced with something better.

PEM is not really a symptom in itself, it’s a cluster of symptoms to describe a particular state and really a way of describing a flare of symptoms ...MS call it a flare ..so why this obsession with PEM with us anyway? The word Malaise is inadequate ...it refers to only cognitive function and not any other symptom?

Perhaps we should focus on ensuring people understand the symptoms (it’s not just fatigue etc.) to allow us to refer to our flares as “activity induced flares”

That way we get around different people having slightly different symptom profiles.

I think maybe PEM has become a way of fighting against the chronic fatigue confusion when actually we should have been banging the drum about the neurological pain, nausea, exhaustion and cognitive problems (sound and light sensitivity included) GI problems etc etc.

I think we just need to adopt a snappier one sentence symptom description and move to flare. We can then describe our flares by intensity duration and frequency which I think would help people understand it better.
 
arewenearlythereyet said:
I think we just need to adopt a snappier one sentence symptom description and move to flare. We can then describe our flares by intensity duration and frequency which I think would help people understand it better.
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Flare is good. To me, it evokes lupus and MS and in those diseases, a flare requires serious interventions to prevent organ damage, often massive intravenous doses of corticosteriods. There is nothing mild about the word "flare".

I also think @arewenearlythereyet has a good point that too much emphasis on PEM as a defining characteristic could backfire. I know my own experience is unusual, but pretty sure I'm not the only one who finds that severe exacerbations can be triggered by other things too. Like infections and in my case, vaccinations.
arewenearlythereyet said:
I think maybe PEM has become a way of fighting against the chronic fatigue confusion when actually we should have been banging the drum about the neurological pain, nausea, exhaustion and cognitive problems (sound and light sensitivity included) GI problems etc etc.
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Yes, this. Couldn't agree more! Instead of highlighting one type of trigger that can cause exacerbations, and focusing on that, we should be talking more about the symptoms that occur during exacerbations.

Schizophrenia is a nice analogy, where the terms 'positive' and 'negative' symptoms are used routinely. Negative symptoms are things like fatigue, apathy, lack of emotion, whereas positive symptoms are things like auditory hallucinations, racing thoughts. The negative symptoms are without doubt the most debilitating, but when it comes to diagnosis, the positive symptoms are key.

It would be great to start a new thread where people try to put out of their minds diagnostic criteria and describe in their own words how it feels when they are feeling their worst. Keeping this separate from the factors that appear to cause the exacerbation (remembering that we can only report ones that are visible to us, and there may be others). Keep the two separate, because one is pure fact (your experience of your symptoms), and the other is conjecture.
 
I've just read a whole load of cfs_research's tweets and unfortunately they can't be Michael Sharpe - not found one spelling mistake so far, and there were lots of words which Sharpe would have struggled with, especially when in a temper. Obviously a close associate, perhaps in communication with Sharpe and tweeting as requested, but it's not Sharpe's fingers on the keyboard - he simply couldn't type that many long words without multiple spelling and grammar errors.
 
CFS Research said:
]You can see that Bruce Levin didn't actually read the study, as he repeats @davidtuller1's misinformation about the patient newsletter here http://www.virology.ws/2015/10/21/trial-by-error-i/ …. Very sad. Why do even top scientists make such basic rookie mistakes? Incomprehensible and not helpful to us.
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Does this person seriously think someone of Prof Levin's stature would pass judgement on a paper without having actually read it? I'm unable to comprehend the standard MO of BPS-ers of automatically assuming that none of their critics ever read a document they're criticising but are just parroting what other people said. I'm wondering if that's a case of 'projection': as we have seen, BPS-ers take things on trust from the authority figures they believe in, without checking that the evidence backs up what they've been told. Hence their assumption that nobody else actually reads papers?

Also "Why do even top scientists make such basic rookie mistakes" is hilariously ironic in this case!

Sean said:
Best I know, CFSResearch = David Jameson = 'sciencewatcher' on Wikipedia.
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Is he also 'Doc James' on wikipedia's CFS page? From what I've read in various places, he and 'sciencewatcher' may be socks of the same person.

ETA:
TiredSam said:
I've just read a whole load of cfs_research's tweets and unfortunately they can't be Michael Sharpe - not found one spelling mistake so far, and there were lots of words which Sharpe would have struggled with, especially when in a temper. Obviously a close associate, perhaps in communication with Sharpe and tweeting as requested.
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Having followed all this stuff on Twitter, it has been notable how either CFS Research, kd, or both, are always on hand to Like Prof Sharpe's tweets (and each other's. Nobody else's, though).
 
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strategist said:
@dave30th seems to think that Sharpe is pretending to be a patient on Twitter. Now with the help of David Jameson posting as cfs_research.







Maybe @Jonathan Edwards wants to respond to the last tweet.
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It is very easy to interpret the re-analysis. It confirms the uninterpretability of the original paper.

The re-analysis paper does not set out to prove that CBT and GET and nearly-slightly-wonderful treatments with a 2% recovery rate. It sets out to show that the claims of any useful efficacy are groundless.
 
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