Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

Hip

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There is nothing stopping them from changing the reporting code to reflect ME but changing nothing else.
From the disability insurance perspective, going back to the original name and neurological classification of ME will make a huge difference, because disability insurance companies cannot refuse to provide lifelong disability support payments to patients with physical diseases like ME.

At present, with the biopsychosocial classification of CFS, disability insurance companies will refuse to provide lifelong disability support, because insurance regulations stipulate that psychological conditions do not get long term support.


If we could go back to the ME name and ME neurological classification, these disability insurance companies would suddenly have to start paying billions for ME patient disability support.

Once that happens, I think these companies might start putting pressure on governments to increase research into ME treatments, simply because ME would be costing the insurance companies a fortune every year.


The trouble with ME/CFS is that it often seems to be the parents, wives or husbands of the patients who financially support them over the decades, so the true cost of this illness becomes invisible to governments and society.

If disability insurance companies suddenly were forced to pay out billions in income support to ME/CFS patients, that would be a very good thing, not only because it is fair to the patients and their families, but also, the financial pain of ME/CFS would become all to apparent to wider society, and that would hopefully spur on more research into treatments.
 
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The trouble with ME/CFS is that it often seems to be the parents, wives or husbands of the patients who financially support them over the decades, so the true cost of this illness becomes invisible to governments and society.
Exactly! There is the cost of living and there is the cost of treatment of the disease. I would also factor in the economic impact of years of lost income. If I had to put a dollar amount on the lost wages this disease has cost me, I would put it at around $750K.
 

halcyon

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Changing the name back to ME only counts if we can get the guidelines for diagnosis and treatment officially changed.
This is kind of the crux of the whole thing. It's not about the names, what we're really fighting for (at least I am) is for the symptoms and diagnostic criteria that go along with ME to be recognized as distinct from CFS and be put in use. I really don't care what ME ends up being called as long as it's accurate and can't possibly be confused for any other thing but what Ramsay was describing. So for now it makes the most sense to use the name ME, regardless of its medical accuracy, when we're talking about Ramsay ME because that's what it has been called for decades and we'll all know what we're talking about (at least we should) when we use it. This is why 'ME/CFS' or saying "ME is just what we call CFS in the US" is so damaging, because it links together entirely different diagnostic criteria that don't overlap. This is even a problem with CFS where the same name is used to describe two different things, Oxford CFS and Fukuda CFS. Hell, it's probably even two different things when using Fukuda and Holmes as Lenny Jason has shown.
 

Hip

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It's not about the names, what we're really fighting for (at least I am) is for the symptoms and diagnostic criteria that go along with ME to be recognized as distinct from CFS and be put in use. I really don't care what ME ends up being called as long as it's accurate and can't possibly be confused for any other thing but what Ramsay was describing.
To me, it seems unlikely that CFS and ME are two different diseases, although I hasten to add this is only my hunch and feeling, because we don't really have much evidence in this area, one way or the other.

My thoughts are that there is a far greater difference between ME/CFS patients at the two ends of the mild, moderate and severe scale of ME/CFS severity than there is between a Fukuda-defined CFS patient and a Ramsay- or CCC-defined ME patient.

I tend to think that patients might identify more with ME if their condition is severe, and perhaps identify with CFS if their condition is on the milder side.



It could be that ME/CFS involves a number of distinct pathophysiological mechanisms, and a given patient may have all of these pathophysiologies, or just a subset of them. If they have all of them, perhaps that qualifies for ME; but if they are missing some pathophysiological mechanisms, perhaps that is a slightly different and milder disease.

For example, there is accumulating evidence that POTS and OH may have an autoimmune etiology. So if true, that means this sort of autonomic nervous system autoimmunity is one of the pathophysiological mechanisms that can appear in ME/CFS. But perhaps not all ME/CFS patients will have this pathophysiology, and whether you have it or not will change the nature of your ME/CFS to a degree.

But I still see this as being on a continuum of mild to severe: the more pathophysiological mechanisms you have going on, the more severe your ME/CFS is likely to be.
 
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My medical record says CFS.

My worry is thus:

If this motion passes, and the disease splits, then any gains made treatment-wise or financial-wise for ME, I'll be automatically locked out of. Denied.

Then I'll face an uncertain struggle to get my diagnosis updated.
 
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These 2 documents: the ICC for M.E. and M.E. Hospital Booklet are very useful to understand how M.E. is different from CFS and to assist with appropriate diagnosis and treatment now. M.E. is a clearly defined disease and I do not see the need to change this. What is needed is education and research by all Health Departments worldwide as in Norway and N. Ireland who are now pushing to have the ICC adapted for diagnosis and treatment of M.E. We need to stop fussing and wasting more time over 'a suitable name' and start promoting and using what is relevant up-todate and beneficial to us now. Cheers to all.
 

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slysaint

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My medical record says CFS.

My worry is thus:

If this motion passes, and the disease splits, then any gains made treatment-wise or financial-wise for ME, I'll be automatically locked out of. Denied.

Then I'll face an uncertain struggle to get my diagnosis updated.
are you in the UK?
I was diagnosed with ME in 2001. In my medical notes it was always referred to as ME for all reports tests etc until around 2012 when it suddenly became classed as CFS. As others have said, with the IT system used by the NHS there is now no direct code number for ME. If you search for ME on the NHS website it calls it CFS and says:
"
Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest.

CFS is also known as ME, which stands for myalgic encephalomyelitis. There's some debate over the correct term to use for the condition, but these pages will refer to the condition as CFS."
IT GOES ON TO SAY:
"
Why it happens
It's not known exactly what causes CFS. Various theories have been suggested, including:
  • a viral or bacterial infection
  • problems with the immune system
  • an imbalance of hormones
  • psychiatric problems, such as stress and emotional trauma
Some people are thought to be more susceptible to the condition because of their genes, as the condition is more common in some families."

This is not a naming problem but one of blatant misdiagnosis.

although I don't 100% agree with everything, JBs hummingbird site explains it better than I ever could:
http://www.hfme.org/
 
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I live in Australia and it is classified as:
CHRONIC FATIGUE SYNDROME - unexplained fatigue
ICD-10-F48.0 (Neurasthenia)
MYALGIC ENCEPHALOMYELITIS
ICD-10 G93.3 (Disease of the nervous system)

I think it varies from country to country however for me, my 2 treating doctors used the ICC and diagnosed me with M.E.

JB hummingbird is a great website, as she was a great advocate and a sad loss to us here in Australia with M.E.. I was fortunate to have exchanged emails with her over the last 4 years and have both her books. Take care.
 
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are you in the UK?
I was diagnosed with ME in 2001. In my medical notes it was always referred to as ME for all reports tests etc until around 2012 when it suddenly became classed as CFS. As others have said, with the IT system used by the NHS there is now no direct code number for ME. If you search for ME on the NHS website it calls it CFS and says:
"
Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest.

CFS is also known as ME, which stands for myalgic encephalomyelitis. There's some debate over the correct term to use for the condition, but these pages will refer to the condition as CFS."
IT GOES ON TO SAY:
"
Why it happens
It's not known exactly what causes CFS. Various theories have been suggested, including:
  • a viral or bacterial infection
  • problems with the immune system
  • an imbalance of hormones
  • psychiatric problems, such as stress and emotional trauma
Some people are thought to be more susceptible to the condition because of their genes, as the condition is more common in some families."

This is not a naming problem but one of blatant misdiagnosis.

although I don't 100% agree with everything, JBs hummingbird site explains it better than I ever could:
http://www.hfme.org/
Yes UK here.

So what does this mean for us?

Should I sign the petition or not? 'Cos I can see us being locked out of treatment for ME 'cos we're all listed as CFS now...
 
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quite the opposite; they would have to reinstate the ME code separate from CFS and it should mean we get proper treatment for what we are actually suffering from based on a diagnosis respecting ALL symptoms.
Why would they do that? What's to stop "them" just saying "sorry, CFS, run along now please"?

They could say "yes, we reluctantly agree, ME is separate from CFS, but tough luck 'cos you've got CFS"

Would we all need to persuade our GPs to reclassify us, or would all cases of CFS be automatically switched to ME?
 

AndyPR

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Guiding the lifeboats to safer waters.
To be honest @Skippa I wouldn't worry too much about this petition. In my opinion, it won't reach the required numbers for even a response from Parliament, let enough for it to be debated, due to the technical nature of the argument being made which won't engage the general public, whose signatures would be required to make up the numbers.

Also, the main issue that needs addressing is this;
The term CFS was coined in the USA and seized upon by psychiatrists in the UK, and today the psychiatric view of ME (that ME does not exist but is really a "fatigue syndrome") now dictates the Department of Health, Nice, and NHS policy. While this policy remains in place, ME patients are untreated.
Call it ME or CFS or ME/CFS but treat it as the physical condition that it is should be the main argument, and also has the added benefit of being more understandable to the public. The fact that we can point to the ever growing body of biomedical research showing the various effects of ME on us against the "if we say it's psychological then it must be" non-research from the BPS crowd means we have an argument that continues to grow ever stronger.
 

panckage

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These 2 documents: the ICC for M.E. and M.E. Hospital Booklet are very useful to understand how M.E. is different from CFS
Not quite. It only shows how ICC CFS differs from (there is only 1 classification?) ME.

It says nothing about CCC CFS, Fukuda CFS, or any other diagnostic criteria for the disease.

While we are at it why don't we argue that SEID is yet another disease? I mean following the same logic it has a different name so it must be a different disease

This sort of random divisiveness is not helpful to our community
 
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I was confused about what I was sick with from the start, I am still confused over ten years later. The worst part about is the doctors have been confused all along till this day. While a few may have solid facts, it seems most of us only have theory and conjecture to back us up. Therein lies the rub for the goose.
 
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halcyon

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While we are at it why don't we argue that SEID is yet another disease? I mean following the same logic it has a different name so it must be a different disease
It very well may be given how broad and inclusive the criteria is. Again, it's not about the name, it's about who the criteria selects. We know that the different criteria available select different patients. We have to accept the possibility that these different patients have a different underlying disease.

This sort of random divisiveness is not helpful to our community
It's not random divisiveness. It's a call for scientific accuracy so that some actual progress can be made on research. A decade plus of research using broad CFS criteria resulted in nothing more than contradictory studies and no progress. These are lost years. It's only now that people are starting to research CCC and ICC cohorts that we're getting somewhere. If research is done on very strict cohorts then eventually a biomarker will be found and then we can easily go back and test that biomarker on broad cohorts to see who stays and who goes. If we keep researching broad cohorts so nobody's feelings get hurt we will never find a biomarker.
 
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I think it is undeniably clear that the name Chronic Fatigue Syndrome is leading many researchers and therapists down the wrong road... As if they can't see past the name itself.
 
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It's not random divisiveness. It's a call for scientific accuracy so that some actual progress can be made on research. A decade plus of research using broad CFS criteria resulted in nothing more than contradictory studies and no progress. These are lost years. It's only now that people are starting to research CCC and ICC cohorts that we're getting somewhere. If research is done on very strict cohorts then eventually a biomarker will be found and then we can easily go back and test that biomarker on broad cohorts to see who stays and who goes. If we keep researching broad cohorts so nobody's feelings get hurt we will never find a biomarker.
I totally agree, these are lost years. I think there is a lot of variation in the symptoms people experience, so therefore a lot of different directions the research can take / has taken. So the quest, as you say, is to identify relevant biomarkers in our population, thus making it possible to find the grail.

I decided to jump into the fray this year to explore Stanford's take on things. Whether I get a cure or at least some relief is yet to be seen. In any case, some validation would be nice to have, even if the approach is wrong.
 

slysaint

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"
CFS Definitions

"Criterion variance is likely to occur when explicit criteria do not exist for diagnostic categories. For example the US case definition of CFS treats two central symptoms, post-exertional malaise and cognitive impairment, as optional rather than required criteria."
-Jason, Taylor, Song, Kennedy, Johnson-

"Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality.
The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American imperialism that one could imagine."
-Dr. Byron Hyde -"

http://www.name-us.org/defintionspages/DefCFS.htm