Next CFSAC meeting date has been announced for November 8, 2011

[Andrew]

Andrew, perhaps the name was put on an ME outbreak but it was not recognized or even described as what ME really is, which became CFS. CFS does not adequately define or describe ME in the medical lexicon and NEVER has.

Which is exactly why we are trying to change it. I really don't see why you are so dead set against this. Do you have ME? I do. I'm tried of it being called CFS and I'm tired of people opposing correct diagnosis of people with CFS.

That one instance (McEvedy) was fairly isolated and contained and just an opinion piece by those who had never been involved or seen any patients. Even then it didn't carry much weight. CFS has completely undermined, trivialized and has been an absolute misdiagnosis for ME patients and utter disaster for more than 20 years. So hardly the same magnitude.

Actually, it was his Ph D study and it was reported all over the place. While searching online, I've found psychiatric hospitals in the UK who claim to treat ME. That is ME, not CFS. This is not isolation. It's tragic.

 

[Jill McLaughlin]

Andrew, They - or you - are doing the opposite of what you just said. They are making ME the same as CFS via ICD coding. It will not be true ME but a synonymous term for CFS. It will be CFS that is called ME or ME/CFS (thus the name Coalition for "ME/CFS").
The term ME will exist but not the actual diagnosis. This is what Wessely does. He studies chronic fatigue and pretends to be studying ME. We will go the way of NICE. THIS IS WHAT THEY ARE DOING.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1111a&L=co-cure&T=0&P=361

My daughter has ME. They are eliminating her ME diagnosis and making it officially "ME/CFS." ME patients have the right to be angered by interference and incompetence.

Which is exactly why we are trying to change it. I really don't see why you are so dead set against this. Do you have ME? I do. I'm tried of it being called CFS and I'm tired of people opposing correct diagnosis of people with CFS.



Actually, it was his Ph D study and it was reported all over the place. While searching online, I've found psychiatric hospitals in the UK who claim to treat ME. That is ME, not CFS. This is not isolation. It's tragic.

 

[Andrew]

The term ME will exist but not the actual diagnosis.

So far I haven't seen anyone suggesting that that the term ME be removed and replaced with ME/CFS. I've only seen people suggesting that CFS be seen as a lousy DX that includes a lot of people who really have ME. And so they talk about them in the same context, and use the term ME/CFS.

What do you think of the ICC? Do you think that should be opposed?

 

[Jill McLaughlin]

"So far I haven't seen anyone suggesting that that the term ME be removed and replaced with ME/CFS."

They are only adding the term ME to CFS.

"I've only seen people suggesting that CFS be seen as a lousy DX that includes a lot of people who really have ME." And so they talk about them in the same context, and use the term ME/CFS."

If CFS is a lousy dx then ME patients should not have it. *If CFS includes people who have ME then we should remove those with ME from the dx of CFS, not officially combine them via ICD codes. This literally creates a dx of ME/CFS. Using ME/CFS gives the impression that they are the same and conveys the very wrong message to the public.

Whatever they say, this is what they are doing. We should be doing the exact opposite of what they have done.

So far I haven't seen anyone suggesting that that the term ME be removed and replaced with ME/CFS. I've only seen people suggesting that CFS be seen as a lousy DX that includes a lot of people who really have ME. And so they talk about them in the same context, and use the term ME/CFS.

What do you think of the ICC? Do you think that should be opposed?

 

[rlc]

Hi Andrew, Im sure you are tired of ME being called CFS and if as you say you match the Ramsey definition and have had other possible causes of your suffering ruled out, then you should have a ME diagnosis. Chronic fatigue syndrome has to be the most demeaning and trivialising name for an illness ever invented.

The reason why people in the states have had so much difficulty in getting a ME diagnosis is quite simply because ME has not been in the US ICD codes. Epidemic Neuromyasthenia which is the name ME was known by in the US since the 1950s has remained in the US ICD codes; however the CDC and CAA have done such a good job of suppressing the name Epidemic Neuromyasthenia that hardly anybody even knows it exists.

Im sure you are also aware that CFS is used as a dumping ground by doctors where all the patients with chronic illness get put, when the doctors cant work out what is wrong with them after a few basic tests. This is made worse by the frankly appalling guide lines set out by the CDC on which tests to do to rule out other diseases that cause similar symptoms. These poor people are being left to suffer and often to die because of the failure to investigate them properly.

This has caused massive confusion in research due to mixed cohorts being studied. At the moment CFS is a waste basket diagnosis that can mean anything.
So surly I would have thought everyone would have been in agreement that it would be a really good idea if ME was introduced to the US ICD in the neurological section for the first time ever, and that the neurological nature of the diseases could then be used to help separate ME patients from all the other patients, and that these none ME patients should have a different code, until the CDC is pressured to get of its ass and introduce compulsory extensive testing to find the cause of all these peoples illness and treat them. and if there is then any patients that still have a mystery illness then that could be researched as a separate group.

Its just the only logical approach to take.

Well this is exactly what the proposed changes to the US ICD were going to be before the coalition started meddling in the process.

ME was going to be introduced into the US ICD for the first time, as a neurological illness, and CFS was going to be in a different none neurological section far away from ME and the confusion ended once and for all, so for the first time it was going to be split into two groups, which would then mean the ME patients who had been wrongly diagnosed as CFS patients would then be able to explain that they had neurological symptoms to their doctor and get their doctor to refer them to a neurologists, ME patients always fail neurological tests, so the diagnosis can be confirmed and then your diagnosis would be changed to ME and youd be eligible for insurance claims and being treated with respect as a seriously ill patient with a physical disease. It would also make it so much easier to get research done on patients who have ME instead of the mixed cohorts that have been going on for decades.

This is what was proposed before the coalition started meddling. And personally I think it was a very good thing. It should also be noted that the coalition are constantly trying to say that the R code that CFS was going to be separated from ME, and put in, is a psychiatric code, there is absolutely no truth in that at all, it was to be coded as signs and symptoms unspecified, meaning these people are sick and we dont know why, it does not make any judgement at all as to whether the cause is physical or psychological.

So thats what was going to happen, but the Coalition decided they didnt like it, and came up with their own plan. I will try and explain the serious flaws in their plan to give CFS exactly the same ICD code as ME is going to get for the first time ever in the US.

1.By giving CFS exactly the same code as ME G.93.3 it means in the eyes of doctors they are the SAME ILLNESS!! Because US doctors are so used to using CFS they will keep using CFS and you wont be able to get your diagnosis changed to ME, they will tell you its exactly the same illness because it has exactly the same code and in the US we use CFS, not ME, so you will be stuck with a CFS diagnosis!!

2. It elevates a waste paper diagnosis to the level of a real disease, and says that it is exactly the same as ME, so were back to square one with ME and all the other diseases in the CFS group being seen as exactly the same thing, and because US doctors have used CFS for decades the whole lot will remain being known as CFS, ME patients wont get their diagnoses changed to ME and ME wont be researched separately and all the misdiagnosed will remain misdiagnosed until they die. The mess that has existed since 1988 will continue exactly the same.

3. Having everyone with the same code therefore the same illness!!!! Means that the whole lot are in real danger of being given a Complex Somatic Symptom Disorder (psychiatric) Diagnosis. The reason for this is. Although the coalition is constantly saying the WHO version of the ICD has both ME and CFS coded at G93.3 this is not true!!

Diseases that the WHO are sure are real diseases get coded in the Tabular list, ME is there, CFS is not, its in the appendix which the WHO says could just be an 'imprecise and undesirable term' or 'a rubric for ill-defined conditions' (from Introduction to ICD-10 Vol.3, 2nd Edn.)

So the problem is that even this tenuous link between CFS and ME in the WHO ICD has been used to destroy the lives of hundreds of thousands of people and portray everyone weather they are in the CFS or ME group as having a psychiatric illness.

In Europe and particularly the UK the WHO ICD having CFS linked to ME in the appendix has been used to say that they are the same illness CFS/ME. ME/CFS, (same code same illness, even though it isnt what the WHO ICD actually says) because the CFS group contains people that do have psychiatric illnesses e.g. depression this has allowed the likes of the Wessely school to select patients that have psychiatric illnesses study them and declare that ME is a psychiatric illness, and inflict psychiatric treatment on them and block proper medical attention and research for the physically sick patients, be they ME patients or misdiagnosed patients.

US patients need to be aware that the Wessely school have been working in the States with the CDC for decades Simon Wessely and Michael Sharpe co wrote the Fukuda definition, and Peter White was involved in the Reeves Empirical definition, Michael Sharpe is involved in writing the DSM complex Somatic symptom disorder. The CDC is already proposing Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for US CFS patients!

The coalition proposal will create the same opportunities for all US ME patients to be reclassified as psychiatric patients, if ME and CFS have the same code as the coalition wants them to have, then they will simply say same code, same disease!!! Select patients who are psychiatrically ill in the CFS group, study them declare that they are all suffering from a somatic illness and both ME and CFS can then be moved into the DSM for mental disorders and everyone will be being prescribed CBT and GET, just as they do in the UK. I would recommend that people think very carefully about this before supporting the Coalition proposal!!!! If people dont want CFS in the R codes, get it put in a different one, but not exactly the same as ME. Its been disastrous in the rest of the world and it will be in the US!!!

4 The Coalition is selling this proposal on the basis that it is a step wise change, and that once CFS has the same code as ME, then all of a sudden CFSs name will be changed to ME. This is pure fantasy, and shows a deep misunderstanding of how ICD codes work, ICD codes are very seldom changed it is likely to be decades before CFS gets looked at again and possibly removed, but the most likely outcome is that as the US doctors only know CFS and will diagnoses everyone with it weather they are in the CFS group or the ME group, so you will have exactly the same situation everybody getting diagnosed with CFS, if there is any plan to change the G.93.3 code in the distant future it will be to remove ME because it is a name the US doctors wont be using, ME will disappear and youll be stuck with CFS forever!!

The other point is that it is scientific nonsense to get the waste basket diagnosis CFS name changed to ME and have all the misdiagnosed who have a large variety of different medical conditions mixed in with the ME patients, and give them all the same name.

This is exactly the same gigantic mess weve all been suffering from for decades, changing this mess of a whole lot of patients with different conditions from being named CFS to being named ME will not help a single person!! It just continues the mess under a different name.

What is needed is, what the original changes proposed for the ICD were going to be ME and CFS with different codes!! Then ME patients can be separated and researched, the CFS patients will be in a separate group, because they dont have a neurological illness. Then the likes of the coalition could use their contacts to get more compulsory testing for the CFS group to find out what is really wrong with them. In the Reeves definition it doesnt even have Vitamin D deficiency, celiac, hemochromatosis and adrenal insufficiency as conditions to rule out and personally Im completely baffled as to why all these advocacy groups wont try to do anything to get better testing before people even get diagnosed with CFS, they seem to be completely obsessed with saying that everyone has the same illness and we have to find the one cure. Everybody does not have the same illness and therefore they will never find one cure to fix everyone, and for a lot of people the cure already exists they just havent been given the right diagnosis and advocacy groups who are not trying to fix these issues are grossly letting down a large section of the patient community.

5 The Coalition proposal is being sold to people on the basis of evidence that is false, weather this is because the people behind it are medically uneducated and not able to understand the information or some other reason I dont know. As well as misrepresenting what the WHO ICD codes really say, and saying that CFS proposed R coding meant that it was psychiatric, which is also not true. The coalition are trying to sell their proposal on the basis that the ICC definition supports what they are doing and that the ICC is proposing that the name CFS be changed to ME, this is completely false, if they would care to read the entire ICC definition, instead of taking brief paragraphs out of context and misrepresenting them as evidence that the ICC supports them, they would find that in the conclusions section at the bottom (the part that explains what the rest of it means) it says.

Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

Which means patients that fit the ICC definition, have ME!!! Those that dont, have CFS and are to remain with a CFS diagnosis.

They clearly show that CFS as defined by Reeves and NICE are to continue to exists, with the ME patients separated from the CFS patients.

The ICC does not support the coalition proposal it is completely against it.

If people think that the coalition (who to the best of my knowledge dont have a single medical degree between them) know better than all the highly qualified and experienced doctors that wrote the ICC, then by all means support them.

If however people feel that they should listen to the experts who wrote the ICC who are actually qualified to have an opinion, and who state categorically that ME and CFS are different conditions and have to be separated. Then oppose the Coalitions proposal.

All the best

 

[Jill McLaughlin]

A bigger issue is that their proposal does not do what they say. But unfortunately we've had massive PR and sample letters and campaigns for support, based on misinformation.

The proposal seems more concerned with proving the CFS isn't fatigue. I think our "CFS isn't fatigue" platform has timed out. Think about this logically. Or medically, X syndrome isn't X. OK, then what is it and call it that. End of discussion. From the scientific perspective this is the situation, so don't expect anything more.

The Coalition said or agreed that ME isn't really diagnosed, and the NCHS Committee members said they had not seen a case or seen it in med records. Well with a baseline knowledge, this is not a numbers game. Prevalence for CFS has been up to 4 million. Strict criteria would put ME at 800,000. It is not as common or well known. And they've probably never seen a case of Ebola either.

STOP THE OFFICIAL ELIMINATION OF ME AS A DIAGNOSIS BY COMBINING IT WITH CFS VIA ICD CODING AS PROPOSED BY THE COALITION 4 ME/CFS!
To oppose this proposal, contact: NCHS <nchsicd9CM@cdc.gov>,
Donna Pickett <dfp4@cdc.gov> ASAP! Deadline is Nov 18.
Patients do not have to enumerate all of the scientific objections, just as stakeholders.
For ME patients, this will eradicate our diagnosis.

Hi Andrew, Im sure you are tired of ME being called CFS and if as you say you match the Ramsey definition and have had other possible causes of your suffering ruled out, then you should have a ME diagnosis. Chronic fatigue syndrome has to be the most demeaning and trivialising name for an illness ever invented.

The reason why people in the states have had so much difficulty in getting a ME diagnosis is quite simply because ME has not been in the US ICD codes. Epidemic Neuromyasthenia which is the name ME was known by in the US since the 1950s has remained in the US ICD codes; however the CDC and CAA have done such a good job of suppressing the name Epidemic Neuromyasthenia that hardly anybody even knows it exists.

Im sure you are also aware that CFS is used as a dumping ground by doctors where all the patients with chronic illness get put, when the doctors cant work out what is wrong with them after a few basic tests. This is made worse by the frankly appalling guide lines set out by the CDC on which tests to do to rule out other diseases that cause similar symptoms. These poor people are being left to suffer and often to die because of the failure to investigate them properly.

This has caused massive confusion in research due to mixed cohorts being studied. At the moment CFS is a waste basket diagnosis that can mean anything.
So surly I would have thought everyone would have been in agreement that it would be a really good idea if ME was introduced to the US ICD in the neurological section for the first time ever, and that the neurological nature of the diseases could then be used to help separate ME patients from all the other patients, and that these none ME patients should have a different code, until the CDC is pressured to get of its ass and introduce compulsory extensive testing to find the cause of all these peoples illness and treat them. and if there is then any patients that still have a mystery illness then that could be researched as a separate group.

Its just the only logical approach to take.

Well this is exactly what the proposed changes to the US ICD were going to be before the coalition started meddling in the process.

ME was going to be introduced into the US ICD for the first time, as a neurological illness, and CFS was going to be in a different none neurological section far away from ME and the confusion ended once and for all, so for the first time it was going to be split into two groups, which would then mean the ME patients who had been wrongly diagnosed as CFS patients would then be able to explain that they had neurological symptoms to their doctor and get their doctor to refer them to a neurologists, ME patients always fail neurological tests, so the diagnosis can be confirmed and then your diagnosis would be changed to ME and youd be eligible for insurance claims and being treated with respect as a seriously ill patient with a physical disease. It would also make it so much easier to get research done on patients who have ME instead of the mixed cohorts that have been going on for decades.

This is what was proposed before the coalition started meddling. And personally I think it was a very good thing. It should also be noted that the coalition are constantly trying to say that the R code that CFS was going to be separated from ME, and put in, is a psychiatric code, there is absolutely no truth in that at all, it was to be coded as signs and symptoms unspecified, meaning these people are sick and we dont know why, it does not make any judgement at all as to whether the cause is physical or psychological.

So thats what was going to happen, but the Coalition decided they didnt like it, and came up with their own plan. I will try and explain the serious flaws in their plan to give CFS exactly the same ICD code as ME is going to get for the first time ever in the US.

1.By giving CFS exactly the same code as ME G.93.3 it means in the eyes of doctors they are the SAME ILLNESS!! Because US doctors are so used to using CFS they will keep using CFS and you wont be able to get your diagnosis changed to ME, they will tell you its exactly the same illness because it has exactly the same code and in the US we use CFS, not ME, so you will be stuck with a CFS diagnosis!!

2. It elevates a waste paper diagnosis to the level of a real disease, and says that it is exactly the same as ME, so were back to square one with ME and all the other diseases in the CFS group being seen as exactly the same thing, and because US doctors have used CFS for decades the whole lot will remain being known as CFS, ME patients wont get their diagnoses changed to ME and ME wont be researched separately and all the misdiagnosed will remain misdiagnosed until they die. The mess that has existed since 1988 will continue exactly the same.

3. Having everyone with the same code therefore the same illness!!!! Means that the whole lot are in real danger of being given a Complex Somatic Symptom Disorder (psychiatric) Diagnosis. The reason for this is. Although the coalition is constantly saying the WHO version of the ICD has both ME and CFS coded at G93.3 this is not true!!

Diseases that the WHO are sure are real diseases get coded in the Tabular list, ME is there, CFS is not, its in the appendix which the WHO says could just be an 'imprecise and undesirable term' or 'a rubric for ill-defined conditions' (from Introduction to ICD-10 Vol.3, 2nd Edn.)

So the problem is that even this tenuous link between CFS and ME in the WHO ICD has been used to destroy the lives of hundreds of thousands of people and portray everyone weather they are in the CFS or ME group as having a psychiatric illness.

In Europe and particularly the UK the WHO ICD having CFS linked to ME in the appendix has been used to say that they are the same illness CFS/ME. ME/CFS, (same code same illness, even though it isnt what the WHO ICD actually says) because the CFS group contains people that do have psychiatric illnesses e.g. depression this has allowed the likes of the Wessely school to select patients that have psychiatric illnesses study them and declare that ME is a psychiatric illness, and inflict psychiatric treatment on them and block proper medical attention and research for the physically sick patients, be they ME patients or misdiagnosed patients.

US patients need to be aware that the Wessely school have been working in the States with the CDC for decades Simon Wessely and Michael Sharpe co wrote the Fukuda definition, and Peter White was involved in the Reeves Empirical definition, Michael Sharpe is involved in writing the DSM complex Somatic symptom disorder. The CDC is already proposing Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for US CFS patients!

The coalition proposal will create the same opportunities for all US ME patients to be reclassified as psychiatric patients, if ME and CFS have the same code as the coalition wants them to have, then they will simply say same code, same disease!!! Select patients who are psychiatrically ill in the CFS group, study them declare that they are all suffering from a somatic illness and both ME and CFS can then be moved into the DSM for mental disorders and everyone will be being prescribed CBT and GET, just as they do in the UK. I would recommend that people think very carefully about this before supporting the Coalition proposal!!!! If people dont want CFS in the R codes, get it put in a different one, but not exactly the same as ME. Its been disastrous in the rest of the world and it will be in the US!!!

4 The Coalition is selling this proposal on the basis that it is a step wise change, and that once CFS has the same code as ME, then all of a sudden CFSs name will be changed to ME. This is pure fantasy, and shows a deep misunderstanding of how ICD codes work, ICD codes are very seldom changed it is likely to be decades before CFS gets looked at again and possibly removed, but the most likely outcome is that as the US doctors only know CFS and will diagnoses everyone with it weather they are in the CFS group or the ME group, so you will have exactly the same situation everybody getting diagnosed with CFS, if there is any plan to change the G.93.3 code in the distant future it will be to remove ME because it is a name the US doctors wont be using, ME will disappear and youll be stuck with CFS forever!!

The other point is that it is scientific nonsense to get the waste basket diagnosis CFS name changed to ME and have all the misdiagnosed who have a large variety of different medical conditions mixed in with the ME patients, and give them all the same name.

This is exactly the same gigantic mess weve all been suffering from for decades, changing this mess of a whole lot of patients with different conditions from being named CFS to being named ME will not help a single person!! It just continues the mess under a different name.

What is needed is, what the original changes proposed for the ICD were going to be ME and CFS with different codes!! Then ME patients can be separated and researched, the CFS patients will be in a separate group, because they dont have a neurological illness. Then the likes of the coalition could use their contacts to get more compulsory testing for the CFS group to find out what is really wrong with them. In the Reeves definition it doesnt even have Vitamin D deficiency, celiac, hemochromatosis and adrenal insufficiency as conditions to rule out and personally Im completely baffled as to why all these advocacy groups wont try to do anything to get better testing before people even get diagnosed with CFS, they seem to be completely obsessed with saying that everyone has the same illness and we have to find the one cure. Everybody does not have the same illness and therefore they will never find one cure to fix everyone, and for a lot of people the cure already exists they just havent been given the right diagnosis and advocacy groups who are not trying to fix these issues are grossly letting down a large section of the patient community.

5 The Coalition proposal is being sold to people on the basis of evidence that is false, weather this is because the people behind it are medically uneducated and not able to understand the information or some other reason I dont know. As well as misrepresenting what the WHO ICD codes really say, and saying that CFS proposed R coding meant that it was psychiatric, which is also not true. The coalition are trying to sell their proposal on the basis that the ICC definition supports what they are doing and that the ICC is proposing that the name CFS be changed to ME, this is completely false, if they would care to read the entire ICC definition, instead of taking brief paragraphs out of context and misrepresenting them as evidence that the ICC supports them, they would find that in the conclusions section at the bottom (the part that explains what the rest of it means) it says.

Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

Which means patients that fit the ICC definition, have ME!!! Those that dont, have CFS and are to remain with a CFS diagnosis.

They clearly show that CFS as defined by Reeves and NICE are to continue to exists, with the ME patients separated from the CFS patients.

The ICC does not support the coalition proposal it is completely against it.

If people think that the coalition (who to the best of my knowledge dont have a single medical degree between them) know better than all the highly qualified and experienced doctors that wrote the ICC, then by all means support them.

If however people feel that they should listen to the experts who wrote the ICC who are actually qualified to have an opinion, and who state categorically that ME and CFS are different conditions and have to be separated. Then oppose the Coalitions proposal.

All the best

 

[Andrew]

If CFS is a lousy dx then ME patients should not have it.

If it's that simply, why do we have the Oxford Criteria. Why aren't people "just not having it." And why aren't people "just not having" people with serious illness are being forced into mental hospitals. No, Jill, we can't just wave a magic wand and make is all good. I know it, you know it. So let's stop pretending.

If CFS includes people who have ME then we should remove those with ME from the dx of CFS, not officially combine them via ICD codes.

What I see them doing is putting them both under Neurological disease. This is not consistent with your claims that ME is being demoted to a Fukuda style of illness.

 

[Jill McLaughlin]

Andrew, yes it is. CFS is NOT a neurological illness and will NEVER be viewed or accepted as such. This has been proven. As Ric said, they do not seem to understand how this works. Is there anyone with any medical or science degrees or even background? I do not think so. We don't need a magic wand, just accurate diagnoses, not all thrown into some general pot of those with various fatiguing conditions. The answers and reasons are the opposite of what they are trying to do. People with serious illness are being forced into mental hospitals because of the CFS misdiagnosis, which their proposal will create and formalize.

If it's that simply, why do we have the Oxford Criteria. Why aren't people "just not having it." And why aren't people "just not having" people with serious illness are being forced into mental hospitals. No, Jill, we can't just wave a magic wand and make is all good. I know it, you know it. So let's stop pretending.

What I see them doing is putting them both under Neurological disease. This is not consistent with your claims that ME is being demoted to a Fukuda style of illness.

 

[Andrew]

ric, thank you for your detailed answer. And I agree with how messed up things are in the US, and how Wessely made an even worse version in the U.K. And I think we pretty much agree on the state of affairs. I guess where the disagreement happens in these discussions is how to fix it. And what I mean is "how to fix it that will work." Not some pipe dream where we click our heels and it all magically disappears. Because as far as I can see, the U.S. is not the only country where ME patients are being stuck with a DX of CFS. It is happening in the UK as well.

So it looks like there are two strategies.

Plan A: We insist on being diagnosed with ME and not have the CFS name put anywhere on or near our illness. This sounds like the cleanest purest solution. But people have been trying this for a long time, and it hasn't worked. There is no increase in ME diagnosis. Wessley has not gone away. People with ME are being diagnosed with CFS on both sides of the pond. And in the U.K., some are even saying ME is a mental disease.

Plan B: Make an association between ME and CFS to get people to start looking at ME more seriously as a better dx for people who were dxed with CFS. Let time pass, and then eventually try to eliminate the CFS term. This is beginning to work. When I see the Norway scientiest talk, they are saying that their treatment just might work on ME. They are talking about weakness in Fukuda. This would not be happening without the efforts of CFS activists who have been using Plan B.

Or am I understanding this wrong. Do ME organizations not want any ME patients considered for Rituximab trials. If CFI finds a biological cause, do they want doctors to refuse seeing this as possibly applicable to ME treatment. I really don't think so. The feeling I'm getting is that some ME activists want to take everything good that might come from CFS research and claim it for their own, while doing everything they can to undermine CFS patients being associated with them. It's like we are good enough contribute our money to the research, but not good enough to join their country club. Because association with us is so soiling. We have unpure dx lineage. And the fact that we have ME too doesn't matter. Nor does it seem to matter that plan B is working better than Plan A.

 

[Ember]

While it says in the conclusion that those who meet the ME-ICC should be taken out of Reeves and NICE, it says nothing about separating the ME patients from Fukuda. In fact, to my reading, this is proposed to replace Fukuda for the criteria for "the disease."

Surely you're not presuming (are you, Tina?) that the ICC simply identifies all the same patients as Fukuda. The two sets of criteria are clearly different.

Even the Canadian Consensus Criteria are acknowledged to be more restrictive than Fukuda: Within the Fukuda et al. CFS criteria, there are probably those individuals who are more debilitated, and those who are less so, and those in the former group are more likely to meet the Canadian case definition ( Jason, L.A., Torres-Harding, S.R., Jurgens, A., & Helgerson, J. (2004). Journal of Chronic Fatigue Syndrome, 12, 37-52.)

As the ME-ICC puts it, Some symptoms of the Fukuda criteria overlap with depression whereas the Canadian Consensus Criteria differentiate ME patients from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments.... The Canadian Consensus Criteria were used as a starting point. From there the international panel moved in the direction of establishing a more selective set of criteria.

The ICC definition of ME is then more restrictive than the Fukuda definition of CFS. In that sense, the ICC identifies a subgroup of CFS-Fukuda patients, designating them as having ME-ICC.
,
The ICC does distinguish or separate ME patients from Fukuda. Judging by its explicit reference to removing ME patients from the Reeves and NICE criteria for chronic fatigue syndrome, its intent is to set ME patients apart from CFS patients for clinical and research purposes.

 

[Ember]

Plan A: We insist on being diagnosed with ME and not have the CFS name put anywhere on or near our illness. This sounds like the cleanest purest solution. But people have been trying this for a long time, and it hasn't worked.

Have CFS patients in the US been insisting on being diagnosed with ME? Even if that were true, surely the publication of the ME-ICC provides an opportunity for greater success.

 

[usedtobeperkytina]

Ember, from what I understand from reading ME-ICC is that they want to separate out NICE and Reeves from the studies of ME, "which is also referred to in the literature as CFS." It suggests replacing Fukuda as inadequate in defining the patients with "the disease." So instead of 1994 Fukuda, it says this new one is better.

Now, help me out, someone who has read it more recently. Is ME-ICC suggested as a clinical use definition or research? Working just off memory, I got the feeling it was for clinical use. I guess it could be used for both. But I have heard researchers say a more narrow definition for research should be used compared to a broader clinical definition.

(side note, ironically, the Canadian Consensus Criteria was supposed to be for clinical use, but is often used by advocates as a better definition for research. And the 1994 Fukuda definition was supposed to be used for research but has ended up being used for clinical diagnosis. And yet, 1994 Fukuda is overly broad, in most peoples' minds. And so it goes in the upside down world of ME/CFS.)

Ember, forgive me, but I am not getting the point of your post about Coalition's position. There has been no change in position. But evidently you are saying there is some contradiction? But my brain seems to not be registering where it is. Feel free to PM me or email me (editor@claynews.net) or call me (205-680-6890).

Andrew, I appreciate your summing up the matter more clearly and succinctly. (maybe I could have you help me in my communications work?) A point all should know, this proposal is only for clinical use in the U.S. It does not change anything in the rest of the world's CMs or the ICD-10. And while CFS is in the appendix, it is attributed to the same G93.3 code as ME in the ICD-10. So they all share the same code. And that is good for ME patients, as that means all the US research showing neurological abnormalities in CFS designated patients (EEG abnormalities, reduced brain matter, hyperperfusion, abnormal proteins in spinal fluid, autonomic nervous system abnormalities) all apply to your disease.

The one thing we do note is that in the ICD-10 and thus far in the planned ICD-11, PVFS is the lead term for all that is attributed to the G93.3 code. The Coalition supports changing that so that ME is the primary code in ICD-11 and that CFS term be removed (which will be easier if they are all in one code), based on the ME-ICC. I would urge all in other countries to push for that now, which is where I disagree with Andrew. Now is the time to start pushing for that. I don't know the process, but it is with the WHO. And that is the ultimate goal: phase CFS out, replace it with ME and replace Fukuda with ME-ICC.

And, I am going to have to disagree with those who say CFS is not a neurological disease. WHO says it is in their classification, and more importantly, the research does. And while it is imperfect, this is proved even in patients with 1994 Fukuda (although possibly not so with those who only meet Oxford, NICE guidelines and Reeves.) The research referred to in the ME-ICC proves CFS, even Fukuda CFS is a neurological disease.

Gosh, I already referred to a few of the studies, but evidently the point is not getting through that studies that use Fukuda patients for CFS show nervous system abnormalities and thus are used in the ME-ICC to prove that ME, "also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system":
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This is all referenced in the ME-ICC. I pulled all the references in the neurological discussion parts. Is there an ME study in there? I see one ME/CFS study. I didn't see any just ME cohorts. Can anyone tell me, why in asserting a definition for ME are the researchers using mostly CFS research? If the new proposal definition is for ME to the exclusion of CFS, why don't they refer only to Ramsey ME criteria studies? (sorry if there is duplication, but I took it straight reference by reference. And I have to leave the house now.)

I was going to refer to the studies the coalition referred to to show that CFS is a nervous system disease. But it is likely much of the same studies.

Also, wanted to point out that the R code for "chronic fatigue, unspecified" will still exist. So, while those with the neuroimmune disease CFS will be moved to G93.3, those who have chronic fatigue but do not have the neurological disease will be put in that code. The proposal would separate out those who have "chronic fatigue".

Tina

 

[Andrew]

Andrew, yes it is. CFS is NOT a neurological illness

This is simply not true. The fact is, CFS was demonstrated to be neurological based on the most comprehensive study ever done on CFS, and published in the Annals of Internal Medicine. It was based on the cluster in Lake Tahoe. This is the cluster to which the CFS name was assigned. It was assigned before Fukuda and before the Oxford criteria. It is this cluster that defines CFS. And any criteria that does not differentiate these people is nothing but a crock.

 

[Jill McLaughlin]

Andrew, It simply is true. The Incline Village study was done on this one particular cohort, but no CFS definition describes or defines a neurological illness. This is basically a fact. NCHS has to base coding to the definitions. Should be a slam dunk.

All neurological illnesses can have disabling fatigue as a symptom, but none could be diagnosed by fatigue and 4 minor criteria as the sole diagnostic benchmark.

A recent survey of members of a Neurological Association demonstrated that 84% do not view CFS as a neurological illness. The abstract notes that *"this is at odds with the WHO classification." They do not view it as neurological because the definition does not support it as neurological DESPITE the WHO classification. See - codes will not override the definition. Wanna do the same thing and expect a different result?

This is simply not true. The fact is, CFS was demonstrated to be neurological based on the most comprehensive study ever done on CFS, and published in the Annals of Internal Medicine. It was based on the cluster in Lake Tahoe. This is the cluster to which the CFS name was assigned. It was assigned before Fukuda and before the Oxford criteria. It is this cluster that defines CFS. And any criteria that does not differentiate these people is nothing but a crock.

 

[Andrew]

Andrew, It simply is true. The Incline Village study was done on this one particular cohort

The Incline cohort is the cohort that was assigned the CFS name. It defines the illness. Any other cohort that does not match this is not a real CFS cohort.

, but no CFS definition describes or defines a neurological illness.

Wrong again. Both the Canadian and International definitions require neurological symptoms.

A recent survey of members of a Neurological Association demonstrated that 84% do not view CFS as a neurological illness. The abstract notes that *"this is at odds with the WHO classification."

This is not evidence based research. It looks like those neurologists need educating.

 

[Andrew]

Have CFS patients in the US been insisting on being diagnosed with ME? Even if that were true, surely the publication of the ME-ICC provides an opportunity for greater success.

I've talked my doctors about ME. But what can they do. There is no insurance code for ME. So on this level, it's really not a practical move. On a larger scale, there has been some organized efforts, but none succeeded.

In the end, I have a feeling we will be saved by some seeds planted up in Canada long ago. I am very encouraged by what I see being proposed in Scotland regarding the Canadian criteria. And the fact that the Norwegians are saying the Canadian criteria is stronger.

 

[Jill McLaughlin]

There are ICD codes for ME. It's been there since 1969. There has been lots of misinformation about all of this. An ME dx with not much info is better than a CFS dx with harmful info and treatments. Scotland said to separate them. Hopefully they will go with ME-ICC, which is stronger than the CCC, which was published almost 10 years in a journal that no longer exists.

I've talked my doctors about ME. But what can they do. There is no insurance code for ME. So on this level, it's really not a practical move. On a larger scale, there has been some organized efforts, but none succeeded.

In the end, I have a feeling we will be saved by some seeds planted up in Canada long ago. I am very encouraged by what I see being proposed in Scotland regarding the Canadian criteria. And the fact that the Norwegians are saying the Canadian criteria is stronger.

 

[usedtobeperkytina]

Please, what is the reference for saying that ICD-10-CM coding is determined by definition?

I wonder, why aren't people diagnosed with ME upset that the ME-ICC is setting out to make a new definition for their disease based on CFS research.

Tina

 

[Jill McLaughlin]

"The Incline cohort is the cohort that was assigned the CFS name. It defines the illness. Any other cohort that does not match this is not a real CFS cohort."

It was assigned the name but CFS did NOT accurately define the illness.

"Wrong again. Both the Canadian and International definitions require neurological symptoms."

Wrong again in that the ME/CFS and ME-ICC are not CFS definitions.

"This is not evidence based research. It looks like those neurologists need educating."

Diseases are what they are defined to be. Neurologists were right on the money.

You seem to believe this Coalition, which appears to have no one with any medical/science degrees or even background. Too bad they weren't educated.

The Incline cohort is the cohort that was assigned the CFS name. It defines the illness. Any other cohort that does not match this is not a real CFS cohort.

Wrong again. Both the Canadian and International definitions require neurological symptoms.

This is not evidence based research. It looks like those neurologists need educating.

 

[Andrew]

It was assigned the name but CFS did NOT accurately define the illness.

An illness defines itself. If someone gives an inaccurate description, that makes the description wrong.

Wrong again in that the ME/CFS and ME-ICC are not CFS definitions.

Not true. And I invite anyone reading this thread to see which one of us is telling the truth.

Canadian Criteria

International Criteria

Diseases are what they are defined to be.

Not so. They define themselves. That is why medical history is full of examples of illness criteria being changed when they are wrong.