Researchers just need to start using a different name

[cigana]

Hi,

It occured to me maybe there is a simple way to get the name changed - jwe just need researchers to start using a different name. We don't have to sit around waiting for some "authority" to change it (which is never going to happen). For example if we use Prof De Meirleir's reccommendation GIN (Gut Immune Neuro-something I forget) then researchers should start using GIN/CFS in all future papers then gradually over time just GIN will be enough.

How can we get this message out to them?

 

[Guido den Broeder]

The name ME is fine. It has been for many decades and is also in the classification of the WHO.

I don't have a gut disease.

 

[wdb]

The name ME is fine. It has been for many decades and is also in the classification of the WHO.

I don't have a gut disease.

The trouble with ME is that it literally means something along the lines of muscular pain or tenderness and inflammation of the brain and spinal cord, which as far as I know has not been demonstrated to be the cause, nor is it mandatory on any of the diagnostic criteria. If I got to choose a name I would like something emphasising the PEM.

 

[Kanae]

Lying on the consulting room floor I handed my medical practitioner a note asking to be assessed for Myalgic Encephalomyelitis. Blank stare. I pointed out to him on the note that it was coded G93.3 in the official international classification of diseases. Blank stare. With slurred and stumbling speach I told him CFS was a juck case definition in which 2 different patients only required 4 out of the 8 primary symptoms
http://www.cdc.gov/cfs/education/wb1032/chapter2-1.html
and thus could have 2 entirely different diseases; and that the originator of the term says that CFS doesn 't have neurological or muscle signs
http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html
I did have both. With increasing anxiety and agitation from both parties I told him a whole lot more that I cant repeat here. Rolling my eyes while writhing on the floor I invoked the Convention on the Rights of Disabled Persons. I handed him a copy of the international Concensus Criteria (for ME). A month latter I had a diagnosis for ME.

Meanwhile, over at SNOMED, ME is deprecated http://www.snomedbrowser.com/Codes/Details/154989001 and CFS mental http://phinvads.cdc.gov/vads/http:/...tion?oid=2.16.840.1.113883.6.96&code=52702003

 

[alex3619]

It occured to me maybe there is a simple way to get the name changed - jwe just need researchers to start using a different name. We don't have to sit around waiting for some "authority" to change it (which is never going to happen). For example if we use Prof De Meirleir's reccommendation GIN (Gut Immune Neuro-something I forget) then researchers should start using GIN/CFS in all future papers then gradually over time just GIN will be enough.

HI cigana, I have been saying the same for some time. I call it a defacto name change.

There is a huge monster lurking in the shadows though. Under DSM-V and possible ICD-11 it wont matter. You have ME, or GIN or whatever? Recognized under ICD? Ok, then you also have CSSD or complex somatic syndrome disorder (or its name variants) as its a bolt on diagnosis for dysfunctional cognitive beliefs even for established proven medical conditions. Hence medically unexplained conditions can be very real, very physical, and their claim is this does not matter. I see this as an attempt to circumvent the limitation that a disease can only have one diagnostic category under ICD, and this does have some limited rational justification. The problem is that this is very much vulnerable to abuse especially by psychiatrists with vested interests in particular research, or the general mass of doctors who simply do not have time to research the literature on ME.

However, one thing that could happen is an adoption of a single diagnostic entity by biomedical researchers, one that is incompatible with the Oxford definition, could still undermine the literature based upon this UK definition. It would also dissassociate future research in the USA from older CDC research using flawed definitions. So while it might undermine old bad research, it wont do anything to stop the new bad research.

Bye, Alex

 

[alex3619]

and thus could have 2 entirely different diseases; and that the originator of the term says that CFS doesn 't have neurological or muscle signs

Hi Kanae, congratulations on your success! One of the problems we face in the future is the presumption that CFS and ME is the same diagnostic entity, despite the fact that a patient can be diagnosed with either and not the other due to the differences. Now this presumption is already widely held, but the new ICD-11 is, if I am reading it correctly, going to formalize the view that they are the same diseases. I hope I am wrong.

Bye, Alex

 

[SOC]

Hi,

It occured to me maybe there is a simple way to get the name changed - jwe just need researchers to start using a different name. We don't have to sit around waiting for some "authority" to change it (which is never going to happen). For example if we use Prof De Meirleir's reccommendation GIN (Gut Immune Neuro-something I forget) then researchers should start using GIN/CFS in all future papers then gradually over time just GIN will be enough.

How can we get this message out to them?

The difficulty with this excellent suggestion is that, as I understand it, researchers in the US are funded to work on a particular illness with a specific name and code. The have to use the ICD-9 US (or whatever is the heck the current code is in the US) or they don't get funding and/or publication. They don't get to choose what they call the illness. I imagine they are no more happy to call it "CFS" than we are to hear it.

If other countries' researchers can pull off a defacto name change, that would be great. Maybe that would encourage US authorities to finally implement a name change and fix the ICD coding.

 

[Kanae]

The trouble with ME is that it literally means something along the lines of muscular pain or tenderness and inflammation of the brain and spinal cord, which as far as I know has not been demonstrated to be the cause, nor is it mandatory on any of the diagnostic criteria. If I got to choose a name I would like something emphasising the PEM.

Go right the way back to Melvin Ramsay;s case definition:
"[Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender." "A very thorough examination of the central nervous system should be made"
http://www.cfids-me.org/ramsay86.html
Ramsay was dealing with parients that all had inflammation of the CNS: he took it as read.

Byron Hyde has stated among other things: that ME sufferers "have a diffuse CNS injury as noted on brain SPECT scans." and have "Testable Muscle Dysfunction".
http://myalgic-encephalomyelitis.com/The_Nightingale_M.E._Definition.html

 

[Kanae]

The difficulty with this excellent suggestion is that, as I understand it, researchers in the US are funded to work on a particular illness with a specific name and code.

Yep, there's a problem deep deep down under that rock: health insurers; military insurers; butt coverers; you name it. What's new? Now a replacement for READ code F286 CFS ( disease of the nervous system) in SNOMED concept code 52702003 CFS mental disorder.

 

[Guido den Broeder]

The name ME was chosen BECAUSE inflammation of the central nervous system had been established. That was back in the 1950s. For some reason, people tend to ignore all research before CFS.

Post-extertional malaise, meanwhile, is not uniquely tied to ME. There are many diseases with this symptom.

 

[ukxmrv]

Even Melvin Ramsay found it increasingly hard to use the name "M.E" and other UK researchers found that funding dried up when they tried to use it as well. That's why we find PVS or PVFS in papers published by people like Behan in the late 80's and early 90's.

Dr Ramsay even had problems getting his book published with Myalgic Encephalomyelitis in it. He had to make a compromise and include the post viral label as well.

In the UK researchers found that applying for funding for studying ME was the kiss of death on their project. Not sure what would happen now and what would happen in the USA of course.

 

[alex3619]

The name ME was chosen BECAUSE inflammation of the central nervous system had been established. That was back in the 1950s. For some reason, people tend to ignore all research before CFS.

Post-extertional malaise, meanwhile, is not uniquely tied to ME. There are many diseases with this symptom.

Hi, the problem with post exertional malaise is its not specific enough. It is not clear that other disorders have the same kind of post exertional issues with such a long delay and extended symptoms. Bye, Alex

 

[cigana]

The difficulty with this excellent suggestion is that, as I understand it, researchers in the US are funded to work on a particular illness with a specific name and code. The have to use the ICD-9 US (or whatever is the heck the current code is in the US) or they don't get funding and/or publication. They don't get to choose what they call the illness. I imagine they are no more happy to call it "CFS" than we are to hear it.
.

Thanks SOC, I didn't realise this. Are they still free to use CFS/GIN (for example) rather than just CFS in their research article texts?