Michael Sharpe skewered by @JohntheJack on Twitter

[Alvin]

Can the man be so stupid as to say this? Does he assume everyone else is stupid enough to take his word for it?

Yes, he does think people will believe whatever lies he spins. It worked so well before, it works for other 'important people' so why not a 'respected' liar like him. The real problem is its no longer working as well, he thinks he can recapture past glory by being persistent in what worked before and quelling this insurrection.

Its seems pretty clear that he doesn't understand the difference between objective and bias, which was probably the point he was trying to make.

This is the trap we keep falling for, taking lairs statements and dignifying them with responses just wastes our energy and time to keep us from the truth
In the end we don't need to try to convince them because we simply can't. We need to make them look the fools they are for others to see.
I will bet money he does know the difference between objective and bias but it suits his goal to pretend his obfuscations are true. We have to not forget this, the best reality deniers know what reality is, they just choose to believe in lies and use any means necessary to defend them.

Except of course that the Weasel himself said in 1989 that there is clear evidence that PWME are not deconditioned. Their muscles have been tested and they work fine (by Andrew Lloyd and Richard Edwards). So PWME do not need to exercise. Somebody seems to have forgotten this along the way!

Not forgot, they believe in their garbage model. Faith often requires distortions from reality denial to forgetting to rationalizations, to cognitive bias... The list goes on because its not about science, its about their belief in their garbage model which has to be defended at any cost.

that statement about deconditioning would be worth having as it is being used as an argument by many people.

Indeed, i am a big fan of skewering people with their own actions and words.

 

[Lidia]

If they show that CBT and GET can cause recovery on an episode-by-episode basis, that means sufferers have to keep going back every time they have an episode.

Then the CBT can’t possibly be helping. If conditioning is the cause of a relapse, then how does CBT simply get “forgotten”. It makes no sense.

 

[Barry]

I am unclear about the exact meaning of deconditioned and "normal muscles". Can muscles not be deconditioned despite being normal? Is deconditioning different from lack of fitness, or does it merely indicate a certain severity of lack of fitness?

But SW says "muscles being neither weak nor fatiguable", so their not being weak must surely mean they are not deconditioned.

 

[Barry]

It makes no sense.

Which is the heart of the matter, and why it is such a pile of poo.

 

[Barry]

The evidence for no significant loss of muscle function is well known and comes from studies in the 1980s. How good it is I do not know, but it is not exactly hidden away.

So GET has no rationale - never did have.

Is this something that needs to be spelled out to NICE? because it seems pretty crucial. Can they be trusted to pick up on it themselves?

 

[large donner]

But SW says "muscles being neither weak nor fatiguable", so their not being weak must surely mean they are not deconditioned.

Its much more taxing on muscles to try to carry round an adult frame when the neurological currents are not sending sufficient signals though the mass.

Hence ones exertion is done in shorter periods of time with the same amount of strain that would be expended in the normal amounts of time in a healthy person.

Lack of atrophy does not prove endurance capabilities.

 

[Barry]

The evidence for no significant loss of muscle function is well known and comes from studies in the 1980s. How good it is I do not know, but it is not exactly hidden away.

This tallies very much with what I observe with my wife. For a while now I have realised one of the great ironies for mild/moderate PwME such as my wife: my wife is actually pretty fit ... except it's as if someone has turned her fuel tap partly closed. For a while she can get on fairly OK, like she's using up the fuel left in the pipe, and during that time her muscles are working well, and it is clear are not the root of her problem, her muscles are not at all wasted. It's so bl**dy obvious to anyone who chooses to share some time with PwME, and these psychiatrist just cannot see what is under their noses. My wife is in pretty good condition in terms of her fitness, because a) Her ME is not severe enough to prevent her doing physical activity to a reasonable degree, and b) Her mindset is to do the best she is capable of. But then the fuel in the pipe runs out, and she is then stuffed until more fuel manages to get past the part closed tap again. Severely limited energy flow is her problem.

I sometimes think it might be easier to run biomedical research on those less severely afflicted with ME, because they are less likely to have additional comorbid conditions to confuse the findings. The more the fuel tap is turned off, the more people's basic life support systems are going to be affected and cause additional symptoms, these additional symptoms being consequential and therefore secondary to the primary cause of the ME.

I say this because from an engineering perspective, when trying to chase down an obscure problem, it is often best to come up with the simplest, least cluttered test case that you can initially, to home in on the primary issue, and then once you have done that it becomes simpler to then apply that new found knowledge to the more complex cases. I do appreciate it is much more complex with people of course, but I would think the same basic rationale would still apply.

I also do wonder that the differences between severe and mild ME may not be so much about different disease mechanisms, but maybe simply down to how badly restricted the energy flow is. I think it inevitable that the more restricted a person's energy conversion rate is, the more complex the knock-on consequences are going to be, because everything a person's body needs to do requires energy, and the more a person's life support systems start to become affected, the more numerous and obtuse some of the consequential effects are going to be. To me it seems sort of obvious that as you progressively turn off someone's energy tap, more and more symptoms are going to materialise.

 

[Barry]

Its much more taxing on muscles to try to carry round an adult frame when the neurological currents are not sending sufficient signals though the mass.

Hence ones exertion is done in sorter periods or time with the same amount of strain that would be expended in the normal amounts of time in a healthy person.

Lack of atrophy does not prove endurance capabilities.

Not sure if you misunderstand me here @large donner. I'm saying that I do not believe the problem is with muscles, but I believe the problem is with energy supply to those muscles. An engine can be in perfect working order, but if the fuel flow to it is restricted, then it cannot provide the mechanical energy it is designed to, because energy out needs energy in ... and it ain't going in.

 

[large donner]

Not sure if you misunderstand me here @large donner. I'm saying that I do not believe the problem is with muscles, but I believe the problem is with energy supply to those muscles. An engine can be in perfect working order, but if the fuel flow to it is restricted, then it cannot provide the mechanical energy it is designed to, because energy out needs energy in ... and it ain't going in.

I didn't misunderstand you I just used your post as a talking point on that topic.

 

[Sean]

All this talk from these clowns of deconditioning, and yet in the three decades they have been active in this field they either never properly tested for it or didn't listen to the results if they did test for it.

Given its critical central role in their model, then its (alleged) existence and significance should have been one of the first components of that model to be tested.

If their failure to do so isn't a warning sign about incompetence or dishonesty, I don't know what is.

Its seems pretty clear that he doesn't understand the difference between objective and bias, which was probably the point he was trying to make.

Oh, he understands it. He is not an idiot. He just can't admit it, because the consequences for him will be devastating.

Except, of course, they will be even worse if he keeps denying it in the face of increasingly overwhelming evidence.

I understand the situation that Sharpe and his like minded colleagues have dropped themselves into, and why they are very reluctant to admit it. It is a very human response. But it is not an acceptable response either.

Their egos, reputations, status, careers, and incomes are of no importance in this equation.

No benefit at followup is one way of identifying bias in the basic study ... its one of the reasons long term follow up is done.

I'd go so far as to say that long-term follow-up results are the main results in a treatment study, and that any clinical guidelines should be primarily based on those results. Doubly so for chronic diseases.

Indeed, i am a big fan of skewering people with their own actions and words.

Best way to hold somebody to account. Point out their own words and choices on the indisputable record, and watch them squirm.

I say this because from an engineering perspective, when trying to chase down an obscure problem, it is often best to come up with the simplest, least cluttered test case that you can initially, to home in on the primary issue, and then once you have done that it becomes simpler to then apply that new found knowledge to the more complex cases. I do appreciate it is much more complex with people of course, but I would think the same basic rationale would still apply.

Assume a cow is a sphere.

 

[Alvin]

All this talk from these clowns of deconditioning, and yet in the three decades they have been active in this field they either never properly tested for it or didn't listen to the results if they did test for it.

You don't maintain a house of cards by testing its structural integrity with a machete

If their failure to do so isn't a warning sign about incompetence or dishonesty, I don't know what is.

As we see in politics lies have great persuasive power.

Best way to hold somebody to account. Point out their own words and choices on the indisputable record, and watch them squirm.

This is true but also a part of the problem. They don't often squirm, they lie or obfuscate or refuse to believe their way out of things. Mainstream media and many people still believe that facts will pave the way to success, but it does not, you can't convince people who willfully deny reality to acknowledge it, and questioning them about it to no end just wastes time and gives intuitive lies a chance to flourish.
The best way to deal with them is not to try to convince them or challenge them directly to cover for their lies, but to show their malfeasance and destroy their credibility so a better way can take over.
In a way this is a subtle distinction on actions but the results are superior.

Assume a cow is a sphere.

I also like assuming there is a can opener.

 

[NelliePledge]

View attachment 3136

Better?

resemblence is uncanny

 

[Sean]

You don't maintain a house of cards by testing its structural integrity with a machete

As we see in politics lies have great persuasive power.

True, dat.

They don't often squirm, they lie or obfuscate or refuse to believe their way out of things.

Depends on the forum and what is at stake.

They will squirm and sweat a lot more in a formal inquiry that has the legal teeth to punish them.

Sophistry and chutzpah only get one so far. There is still the little matter of reality to deal with. You can't cover up everything forever.

I also like assuming there is a can opener.

And pre-marinated.

 

[Alvin]

Depends on the forum and what is at stake.

They will squirm and sweat a lot more in a formal inquiry that has the legal teeth to punish them.

I agree, legal hearings are a great, great trial that i would love to attend

Sophistry and chutzpah only get one so far. There is still the little matter of reality to deal with. You can't cover up everything forever.

True but i'd rather see it collapse today then tomorrow

And pre-marinated.

So thats what made the cow spherical

 

[Sean]

Self-opening, pre-marinated, spherical cow.

I'd buy it.

 

[Sean]

True but i'd rather see it collapse today then tomorrow

Sheesh, Al, where's your ambition?

I want it done no later than 27th October 1984. The day I got sick, you won't be surprised to learn.

 

[Alvin]

Sheesh, Al, where's your ambition?

I want it done no later than 27th October 1984. The day I got sick, you won't be surprised to learn.

That arranged can be.
With our new patented Time Machine we can travel into the future, get the cure and travel back to each of our infection dates and cure it.

 

[Sean]

With our new patented Time Machine we can travel into the future, get the cure and travel back to each of our infection dates and cure it.

I'm in, as long as I can take one for a test drive first.

 

[Alvin]

I'm in, as long as I can take one for a test drive first.

That depends, in preliminary testing we ended up with many paradoxes involving 42 Martians and Planets of Apes. We did however end up with lots of fish

 

[Amw66]

This tallies very much with what I observe with my wife. For a while now I have realised one of the great ironies for mild/moderate PwME such as my wife: my wife is actually pretty fit ... except it's as if someone has turned her fuel tap partly closed. For a while she can get on fairly OK, like she's using up the fuel left in the pipe, and during that time her muscles are working well, and it is clear are not the root of her problem, her muscles are not at all wasted. It's so bl**dy obvious to anyone who chooses to share some time with PwME, and these psychiatrist just cannot see what is under their noses. My wife is in pretty good condition in terms of her fitness, because a) Her ME is not severe enough to prevent her doing physical activity to a reasonable degree, and b) Her mindset is to do the best she is capable of. But then the fuel in the pipe runs out, and she is then stuffed until more fuel manages to get past the part closed tap again. Severely limited energy flow is her problem.

I sometimes think it might be easier to run biomedical research on those less severely afflicted with ME, because they are less likely to have additional comorbid conditions to confuse the findings. The more the fuel tap is turned off, the more people's basic life support systems are going to be affected and cause additional symptoms, these additional symptoms being consequential and therefore secondary to the primary cause of the ME.

I say this because from an engineering perspective, when trying to chase down an obscure problem, it is often best to come up with the simplest, least cluttered test case that you can initially, to home in on the primary issue, and then once you have done that it becomes simpler to then apply that new found knowledge to the more complex cases. I do appreciate it is much more complex with people of course, but I would think the same basic rationale would still apply.

I also do wonder that the differences between severe and mild ME may not be so much about different disease mechanisms, but maybe simply down to how badly restricted the energy flow is. I think it inevitable that the more restricted a person's energy conversion rate is, the more complex the knock-on consequences are going to be, because everything a person's body needs to do requires energy, and the more a person's life support systems start to become affected, the more numerous and obtuse some of the consequential effects are going to be. To me it seems sort of obvious that as you progressively turn off someone's energy tap, more and more symptoms are going to materialise.

That' s basically what the Myhill, Booth et al papers are about- as well as stuff stuck to translocator membranes which partially block route. There is an energy score produced which has a close correlation with the Bell fatigue scale.