Prof Esther Crawley links CFS to uneducated, criminal, drug abuse backgrounds

[keenly]

Cheney can`t back up that statement though. We dont know what this is.

I said I agree with it. Not that it is proven fact. Do you not think that is right on the money? Makes perfect sense to me.

 

[keenly]

From the slide you posted, it listed housing, education, financial pressures, relationships, substance abuse and crime. Is her point that if you are homeless, uneducated, impoverished, alone/or in abusive relationships, have a substance abuse issue and have committed a crime you are more likely to come down with ME/CFS? I have my own bias, but if that is indeed what Prof Crawley is proposing, she is not seeing reality.

First off our experience personally, our time at Dr Lerner's clinic and from what I read on this forum, none of the above applies. If anything, I would categorize those I have had contact with as being smarter than average, middle income or better when they came down with the disease, equally engaged in productive relationships as compared to the world at large, less than average issues with substance abuse and certainly rarely criminal.

Secondly many of the people who suffer from ME/CFS contracted as children/in their youth. That naturally eliminates many of the issues identified including crime, substance abuse, uneducated, but does leave the door open to discuss being impoverished, homeless and in abusive relationships. None of those applied in our case when our child contracted ME/CFS at the age of 14.

The people that keep looking at psychological, environmental and socialogical causes, when there is overwhelming evidence this is physiological. It is the very definition of moronic no matter how "educated" they are!.

She has no evidence whatsoever for what she said, yet she is lambasting those who are 'anti science'. The irony is palpable.

The battle continues........

 

[Marky90]

I said I agree with it. Not that it is proven fact. Do you not think that is right on the money? Makes perfect sense to me.

Fair enough The idea need some more science behind it before i consider it as an option imo..

 

[keenly]

Fair enough The idea need some more science behind it before i consider it as an option imo..

Science is very malleable and corrupt in many aspects, and the good guys normally do not get funding. One example would be Crawley who received millions. Why? she is helping nobody. One has to make their own determinations. Some things will never be proven 100% but if YOU know they are fact, that is all that matters. Trust nobody more than yourself. You are a free person, you do not have to wait for another to tell YOU how things are.

Put it this way. If the body is in a low energy state AKA low cardiac output and you do not get CFS, what would happen? Organ failure. Why do we not get organ failure? Our bodies are saving us. We are in preservation mode. This is CFS. Most of our energy goes to liver function, that is a scientific fact. Only 17% goes to the muscular skeletal system.

 

[Marky90]

Science is very malleable and corrupt in many aspects, and the good guys normally do not get funding. One example would be Crawley who received millions. Why? she is helping nobody. One has to make their own determinations. Some things will never be proven 100% but if YOU know they are fact, that is all that matters. Trust nobody more than yourself. You are a free person, you do not have to wait for another to tell YOU how things are.

Put it this way. If the body is in a low energy state AKA low cardiac output and you do not get CFS, what would happen? Organ failure. Why do we not get organ failure? Our bodies are saving us. We are in preservation mode. This is CFS. Most of our energy goes to liver function, that is a scientific fact. Only 17% goes to the muscular skeletal system.

What we think don`t actually have any value unless we`re the ones conducting the research. The whole problem is that we dont have sound science supporting one theory more than the other. Not sure what being an independent person has to do with that.

You are jumping to conclusions I`m afraid. Hypometabolism is not unique to CFS/ME, and concluding that it`s an ancient survival mode lacks evidence. It could be due to loads of things, could be way down in the causation chain, or higher up. The organs are prioritized anyway, that does not conflict with there being other explanations.

 

[Mohawk1995]

Put it this way. If the body is in a low energy state AKA low cardiac output and you do not get CFS, what would happen? Organ failure. Why do we not get organ failure? Our bodies are saving us. We are in preservation mode. This is CFS. Most of our energy goes to liver function, that is a scientific fact. Only 17% goes to the muscular skeletal system.

Agree. Self protection mode in my thinking as well. Had not heard that about the Liver, but I am not surprised. In my thinking this is also the global reason why people with CFS get Brain Fog. Because the available resources are being transferred to the protective mechanisms. That includes neurophysiologic resources. Cognitive functions are not essential for life and therefore are "robbed" to redirect more resources to the immune and other protective functions. Neuroinflamatory agents play a role in Brain Fog as well, but perhaps they are linked to the reallocation of resources or perhaps even secondary to this reallocation.

 

[keenly]

Agree. Self protection mode in my thinking as well. Had not heard that about the Liver, but I am not surprised. In my thinking this is also the global reason why people with CFS get Brain Fog. Because the available resources are being transferred to the protective mechanisms. That includes neurophysiologic resources. Cognitive functions are not essential for life and therefore are "robbed" to redirect more resources to the immune and other protective functions. Neuroinflamatory agents play a role in Brain Fog as well, but perhaps they are linked to the reallocation of resources or perhaps even secondary to this reallocation.

Yes indeed, same with gut function.

 

[keenly]

What we think don`t actually have any value unless we`re the ones conducting the research. The whole problem is that we dont have sound science supporting one theory more than the other. Not sure what being an independent person has to do with that.

You are jumping to conclusions I`m afraid. Hypometabolism is not unique to CFS/ME, and concluding that it`s an ancient survival mode lacks evidence. It could be due to loads of things, could be way down in the causation chain, or higher up. The organs are prioritized anyway, that does not conflict with there being other explanations.

Yep they are.

 

[Snow Leopard]

From what I understand, there is a much higher incidence of ME in the developed world*.

Population based studies in Asia and Africa (just the one study), all found higher incidence than in the west, though that may be due to methodological differences. There are also a few estimates from South America, but the studies were either not published in English, or the methodologies weren't great.

 

[slysaint]

The correlation is presumably poverty-related stress but I'm disappointed that people feel "stigmatization" at being associated with things which tend to be more misfortunes than moral failings.

If you zoom in above Figure2 picture the caption says:
"Odds of developing chronic disabling fatigue........."

AGAIN, she is not talking about ME, or CFS or ME/CFS but Chronic disabling fatigue AKA Crawleys Fatigue Syndrome.

 

[TiredSam]

"Odds of developing chronic disabling fatigue........."

"Odds"? Is she taking bets or what? How about "probability" or "likelihood" or "risk factors for" or something a little more sciency? Is Esther running a book on our illness now?

 

[Mohawk1995]

You are jumping to conclusions I`m afraid. Hypometabolism is not unique to CFS/ME, and concluding that it`s an ancient survival mode lacks evidence. It could be due to loads of things, could be way down in the causation chain, or higher up. The organs are prioritized anyway, that does not conflict with there being other explanations.

I think there are two discussions going on here:

1. Discovering and explaining how ME/CFS works in the body once it is active (Disease Specific Pathophysiology)
2. Discovering and explaining how ME/CFS becomes active in the body. (Etiology)

The two are linked, but definitely not the same. I think there is much more room for agreement when we all agree that we don't know all of answers to either of the two. We are further down the road on #1 thanks to the work at Stanford and other places, but still a lot to understand.

Take Hypometabolism:

• Disease Specific Pathophysiology: Cell Danger Response, Release of Cytokines and B-Cells, Changes in CFS, reallocation of resources, clinical features such as PEM, Brain Fog, POTS, Anxiety, Unrefreshed Sleep and lot more things I that could be mentioned.
• Etiology: In this discussion, I am more in the camp that there is likely some genetic predisposition that is then enhanced by environmental factors including disease, toxic agents, severe stress, physical trauma and more. This also appears to be some type of threshold phenomenon that once it is over the threshold it is much more difficult to get back and reset to "normal". I believe the etiology to be highly Neurophysiological and related to Neuro-immune/Neuro-protective process that then literally rage out of control, but would most likely never occur without some form of trigger. This then creates the shut down of some functions like energy production, digestive processes and higher cognitive functions and the over-active immune as well as vaso-vagal responses. Very much survival "behavior" on the part of the body. Again etiology is very uncertain and I certainly have mostly theories and not proven fact.

 

[Cheesus]

Population based studies in Asia and Africa (just the one study), all found higher incidence than in the west, though that may be due to methodological differences. There are also a few estimates from South America, but the studies were either not published in English, or the methodologies weren't great.

I was trying to find some papers on global distribution but couldn't. Can you point me in the right direction?

 

[Wolfiness]

Some things will never be proven 100% but if YOU know they are fact, that is all that matters. Trust nobody more than yourself.

But that's pretty much the MO of Prof. White and friends... Have you never been convinced of something that turned out to be wrong?

 

[Marky90]

I think there are two discussions going on here:

1. Discovering and explaining how ME/CFS works in the body once it is active (Disease Specific Pathophysiology)
2. Discovering and explaining how ME/CFS becomes active in the body. (Etiology)

The two are linked, but definitely not the same. I think there is much more room for agreement when we all agree that we don't know all of answers to either of the two. We are further down the road on #1 thanks to the work at Stanford and other places, but still a lot to understand.

Take Hypometabolism:

• Disease Specific Pathophysiology: Cell Danger Response, Release of Cytokines and B-Cells, Changes in CFS, reallocation of resources, clinical features such as PEM, Brain Fog, POTS, Anxiety, Unrefreshed Sleep and lot more things I that could be mentioned.
• Etiology: In this discussion, I am more in the camp that there is likely some genetic predisposition that is then enhanced by environmental factors including disease, toxic agents, severe stress, physical trauma and more. This also appears to be some type of threshold phenomenon that once it is over the threshold it is much more difficult to get back and reset to "normal". I believe the etiology to be highly Neurophysiological and related to Neuro-immune/Neuro-protective process that then literally rage out of control, but would most likely never occur without some form of trigger. This then creates the shut down of some functions like energy production, digestive processes and higher cognitive functions and the over-active immune as well as vaso-vagal responses. Very much survival "behavior" on the part of the body. Again etiology is very uncertain and I certainly have mostly theories and not proven fact.

I think that`s a very good theory. I was just stating the obvious earlier

 

[Mohawk1995]

But that's pretty much the MO of Prof. White and friends... Have you never been convinced of something that turned out to be wrong?

There are two things at play here:
Evidence Based Medicine (the real deal and not the pseudo research only one): As you mentioned Research is malleable and at best it is done as an accurate measure of averages done with the minimal amount of variables. Medical science is even trickier because you are dealing with people and not just chemicals in a vacuum tube. So all medical science should be practiced through EBM. EBM is:

1. The best and most scientific research available. Not perfect and certainly not sterile, but done with the best methodology possible.
2. This research is then filtered through the experience and expertise of the professional applying it to the individual person.
3. It is applied to that person in a way that is relevant to them and to their values (what is it that they want out of the treatment)

If it is not the best research and/or delivered through the expertise of the provider and/or delivered in a relevant way to the patient IT IS NOT EVIDENCE BASED! This is a huge problem with the CBT and GET that has been delivered to people with ME/CFS from what I have read and heard. It was blindly adopted as fact and not delivered with a critical mindset in a way that was relevant or valuable to the patient.

The second issue is patient choice. To clarify it should be an informed choice giving the patient all the information necessary to make it. The patient then has every right to choose to receive the treatment, to refuse the treatment or to advocate for the treatment to be modified or stopped. This too was not performed in the CBT and GET trials from what I can determine. The patient or their family or both were not given an informed choice.

In the end the treatment could be wrong, but if these principles are followed it will not have been manipulatively delivered.