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Guilt by association

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
One of the things that disturbs me is the statement "ME (or CFS) is a physical/real/non-psychological disorder" that is almost a pre-requisite part of a media story in many parts of the world.

The problem with this is that it begs the question and potentially suggests the opposite. Eg guilt by association.

Wouldn't it be great if journalists, instead of making this statement actually reported on the many (albeit non-specific) biological abnormalities that have been associated with ME or CFS?

Most readers are truly ignorant and honestly confuse the concept that there are no specific and agreed upon biomarkers with the idea that there are no biological abnormalities worth worrying about. It is this ignorance that is reflected by many journalists when writing articles.

So when commenting on the internet, or speaking to people, never say "ME is a physical disorder", but try to jump straight to the point and mention the many abnormalities that have been discovered.

Don't attack people for being ignorant, but try to simply re-educate them in a polite manner.
 

user9876

Senior Member
Messages
4,556
The physical/rea;/psychological debate is just the wrong debate it sets the wrong agenda, It seems designed to push the debate into the psychiatrists relm. Hence it feels like they are the ones repeatedly pushing the question.

I think we should talk about the interesting science (immune system issues, rituximab,....) along with the very and large range of symptoms rather than getting into a debate designed to protect one interests hold on funding.
 

Enid

Senior Member
Messages
3,309
Location
UK
I would hope it isn't a physical/psychological debate any more, there is just too much evidence of pathology findings out now, and widely available. To any rightminded observer one is clearly ill and a little feeding to my own Docs and family has aided them and me. But I guess you can't dispose of the psych lobby completely just yet as as Pemberton et al "games" show us.
 

Vincent

Senior Member
Messages
126
Location
Baltimore, Maryland USA
They various governments of the world and stonewalling and deflecting because they could very well be involved. The government, at least in the us, has a long history of experimenting on it's citizens, in secret.

It recently came out that in the 50s in a St. Louis housing project the us military sprayed citizens with radioactive particles. Lets not forget the Tuskeegee experiments where black men were injected with syphilis.

Just days after Red Dirt Report featured a story out of St. Louis, Mo. addressing the shocking revelation that the U.S. Army was conducting secret experiments on citizens of that city without their knowledge in the 1950’s -by spraying toxic substances on them
http://theintelhub.com/2012/10/03/i...the-epas-monstrous-illegal-human-experiments/


Another study where they secretly injected people, against their consent, with plutonium.

US Government Program Secretly Injected Citizens with Plutonium, Uranium
http://naturalsociety.com/us-government-program-secretly-injected-plutonium-uranium/


Dr Charles Engel, who is with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: "I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma..."

http://www.bariumblues.com/mycoplasma_nexus.htm



Dr. MacArthur reported to the Congressmen that within 5 to 10 years it would be possible to create a synthetic biological agent that would disable the human immune system. Two versions would be developed, one that would leave its victims dead, and another that would chronically disable its victims. He requested, and was given, 10 million dollars to perform the research. He warned the congressmen that this was highly controversial research because an error in testing the new agent, or some unforeseen development, may release a pathogen that could kill or disable millions of innocent victims.

http://www.anapsid.org/cnd/activism/skullvalley.html

This just scratches the surface. If anyone is so inclined a quick search with your favorite search engine will produce tons of results. When you couple a history of stonewalling, dismissing, and obfuscation, along with the known history of government experimentation, government could be implicated.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Most readers are truly ignorant and honestly confuse the concept that there are no specific and agreed upon biomarkers with the idea that there are no biological abnormalities worth worrying about.



Most doctors are truly ignorant never mind the journalists or their readers.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
We have lots of biomarkers. What we lack are diagnostic biomarkers. The issue is that many of our biomarkers are shared with other serious diseases like MS. If a marker is shared, its not diagnostic. Now its entirely possible that many of our biomarkers are indeed diagnostic, but validating them as diagnostic is a long and complicated process. For one thing they have to show that such markers are not present in other, similar, diseases.

Bye, Alex
 

beaker

ME/cfs 1986
Messages
773
Location
USA
We have lots of biomarkers. What we lack are diagnostic biomarkers. The issue is that many of our biomarkers are shared with other serious diseases like MS. If a marker is shared, its not diagnostic. Now its entirely possible that many of our biomarkers are indeed diagnostic, but validating them as diagnostic is a long and complicated process. For one thing they have to show that such markers are not present in other, similar, diseases.

Bye, Alex
Is there an easy access list posted somewhere for folks to be able to go back and refer to when responding to articles on net or local paper and whatnot.
My computer and personal medical records runneth over and I have no energy at this point to organize better...... sorry wish I could.
 

user9876

Senior Member
Messages
4,556
We have lots of biomarkers. What we lack are diagnostic biomarkers. The issue is that many of our biomarkers are shared with other serious diseases like MS. If a marker is shared, its not diagnostic. Now its entirely possible that many of our biomarkers are indeed diagnostic, but validating them as diagnostic is a long and complicated process. For one thing they have to show that such markers are not present in other, similar, diseases.

Bye, Alex

Could there be certain combinations of biomarkers that could be used as a diagnostic tool. So each one individually may not discriminate but together they may discriminate between a set of similar diseases.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi use9876, I have said as much on several occasions. Combinations of biomarkers have not received adequate study. Furthermore, we have no idea if any biomarkers cluster in subgroups - I have never read research on that anyway, with one exception.

The closest we have to a combination biomarker is the 37 kDa Ribonuclease L, in combination with elastase. While MS and RA share the cleaved RNase L, they don't have elevated elastase.

Bye, Alex
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Could there be certain combinations of biomarkers that could be used as a diagnostic tool. So each one individually may not discriminate but together they may discriminate between a set of similar diseases.

Absolutely. I have heard such ideas being mentioned before, but I am not sure who/if it is being studied at the moment. I know someone over here wants to do that, but no funding...
 

user9876

Senior Member
Messages
4,556
Hi use9876, I have said as much on several occasions. Combinations of biomarkers have not received adequate study. Furthermore, we have no idea if any biomarkers cluster in subgroups - I have never read research on that anyway, with one exception.

The closest we have to a combination biomarker is the 37 kDa Ribonuclease L, in combination with elastase. While MS and RA share the cleaved RNase L, they don't have elevated elastase.

Bye, Alex

I keep thinking that there needs to be diagnostic guidelines for cronic fatigue so that when a patient presents with fatigue as a main symptom it allows a doctor to walk different paths with different tests so that they can get a better diagnosis. Currently it seems too easy for a doctor to just say oh you are depressed or you have ME without thinking about what might be wrong (hence to high misdiagnosis rates).

From what I remember about probability theory, baysian or evidential reasoning you would have a number of hypothesised conditions given a set of symptoms. So you might have quite a large hypothesis set with apriory probabilities then add in a symptom and change the probabilities of different hypothesis. So here a test or sign or symptom is a good one if it helps reduce the overall set of hypothesis rather than if it identified a particular one. Obviously as you get down to a small set of hypothesis then a test that identifies 1 as most probable is what you want.

In this it is important to consider both the probability of a hypothesis given a symptom and given the absense of a symptom. Since not having a symptom might not rule out a hypothesis.
 

L'engle

moogle
Messages
3,196
Location
Canada
So when commenting on the internet, or speaking to people, never say "ME is a physical disorder", but try to jump straight to the point and mention the many abnormalities that have been discovered.

Don't attack people for being ignorant, but try to simply re-educate them in a polite manner.

Keeping composure in the face of irrational arguments/ignorance is a victory in itself. :cool:
 

snowathlete

Senior Member
Messages
5,374
Location
UK
The closest we have to a combination biomarker is the 37 kDa Ribonuclease L, in combination with elastase. While MS and RA share the cleaved RNase L, they don't have elevated elastase.

Bye, Alex

I read that elastase is produced by phagocytic cells, in order to allow them to move through connective tissue, and it was thought that the elastase was the cause of the degradation of the long form RNase L to the short form version in ME/CFS patients.
But elastase not being elevated in MS and RA doesn't appear to support that...
What do you make of that Alex?
 

golden

Senior Member
Messages
1,831
I think this is very true. But the idea it is psych in origin is perpetuated by the treatment being CBT.

Also doctors still believe this and so you start by speaking to a brick wall of hardened, outdated attitudes.

HWhat are these bio markers or abnormalities though as i dont even know myself! Its the one thing that bothers me the most.

I wish it didnt.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I read that elastase is produced by phagocytic cells, in order to allow them to move through connective tissue, and it was thought that the elastase was the cause of the degradation of the long form RNase L to the short form version in ME/CFS patients.
But elastase not being elevated in MS and RA doesn't appear to support that...
What do you make of that Alex?

How I interpret this is that there are multiple pathways leading to cleavage of RNaseL. There are three (iirc) known enzymes that can do this, but in ME it is elastase that is elevated. Elastase may also have a wider range than just phagocytic cells. We do not know enough.