ME and cfs to be classified as seperate illnesses

[Bob]

Hi Frickly,
That's very interesting.
I think that you don't have anything to worry about in terms of being split off into a simple fatigue group...
It seems to me that you clearly have ME, but currently have been given the label 'CFS'.
In the England, you would be given the label 'CFS/ME'.
If the proposals are to use a new diagnostic criteria for ME (i.e. the Canadian criteria), then I'm certain that you would be given a diagnosis of ME.
By using a new, tighter, more specific diagnostic criteria for ME, some people will inevitably fall outside this diagnosis, and these people would need another diagnosis... this is where CFS would come in: people who are chronically fatigued but without the neurological complications and other complications that come with ME.
I don't think you need to worry about this at all... have you looked at the Canadian criteria to see if it applies to you? I'm sure that would put your mind at rest.
Bob

Hi Bob,

Thanks for your thoughtful reply. Just to clarify, the term ME does not exist in the United States and never has. We are all diagnosed with CFS and this does not mean we are just fatigued. Also, from reading through this thread it seems that many feel that those diagnosed with CFS are largly tired, depressed or have another illness such as thyroid problems. This is simply not true. We have what is called ME in other parts of the world.

It is very difficult to get a diagnosis of CFS. It took me six years to get this diagnosis. Doctors are much more comfortable with the depression label and do not like to use the words Chronic Fatigue Syndrome. Believe me, they are not just throwing the CFS label at anyone who is difficult to diagnose.

My symptoms were identical to multiple sclerosis and rheumatoid arthritis. I literally thought I was dying and still...they just wanted to prescribe antidepressants. No one ever bothered to do an MRI to see if I actually did have MS. :Retro mad: They also refused to do a scan of my neck to find out why my lymph area had been swollen for 10 years! Eventually I did find a doctor that tested for the mycoplasma, EBV, MS, glutathione, ect. Then I was labeled with Chronic Fatigue Syndrome.

We do not embrace this label. It does not describe our illness and I sure don't go around telling people I have CFS.

I think the problem with separating ME from CFS is that it is, in reality, separating our community. This is counterproductive as we are stronger as a group. Rather than dividing our community we should be working on a new diagnostic criteria and doing away with the CFS label all together. This I would fully support.

I may be interpreting this wrong but this is my gut reaction from the title of this thread. If I feel this way then I am sure there are many others who feel uncomfortable as well. This is a difficult and confusing subject that I try to stay away from. Woops....too late...:Retro smile:

 

[The Phantom]

Sort of off topic, but not completely

I know this is off topic, but I want to urge as many people as possible to send written testimony to the CFSAC by 5:00 pm EDT today. There are two complete testimonies written here:

http://www.forums.aboutmecfs.org/sho...save-the-cfsac!

that can be copied and pasted or edited by you. and sent to cfsac@hhs.gov

The second link is to Cort's post and has bullet points that can be elaborated. As someone said somewhere (I'm losing track of what I've read, so please forgive me for not giving due credit) numbers matter to the U.S. government, so the more testimony they receive the better.

The CFSAC can exert pressure to have the Canadian Consensus definition adopted as the standard in the US. In my opinion, this would be helpful. I had hoped to make this the main topic of my testimony, but the committee has shortened the meeting (one day instead of two) and shortened the time for the public to give testimony from five minutes to three minutes. They also are trying to limit the agenda to the CFSAC Charter (not the definition, XMRV, need for centers of excellence, more funding, etc......). To me, this says that they would prefer not to hear what we have to say. I think it would be good to respond by saying as much in writing as we can. Although the two testimonies posted on the first link are fairly long, the whole thread is fairly short. It wouldn't take a huge amount of time to read it.

It could be argued that the Canadian Consensus definition should be part of the CFSAC Charter. I didn't say that in my testimony, but I haven't submitted it yet. I still have time to revise it.

I apologize if this has already been discussed on this thread. I have not been up to keeping track of all that's on this website for a while.

By the way, I don't think any of us think the CFSAC is the greatest thing since sliced bread, but it's currently the only public forum we have to speak to the government in the U.S.

 

[usedtobeperkytina]

I am not in favor of separating us. I agree with a lot of what Frickly said. I do believe this same illness can be mild, medium and severe. And we can have varying symptoms with some of us being affected more in the nerve / pain area (fibromyalgia), some in immune system or metabolic areas (CFS) or neurological (ME). But, fibromyalgia has neurological symptoms and so does CFS, even according to CDC.

I am thinking of MS. It is the same disease, but each person's MS is slightly different. Some have mild symptoms, some go into remission, some have sever symptoms.

I just think we all, except those with depression, have the same illness. That is why I like neuroendoimmune disease. It covers us all. And, for research purposes, you can separate them as to types. Type 1 has _____________ symptoms with ________________ biological abnormalities. Type 2 has _______________ symptoms with _____________ biological abnormalities.

So if someone wants to study, they can do just the NEI patients type 1.

I don't see any problem with this. It includes all who have neuro endo and immune dysfunctions. So we all are shown to have illness in these areas. (I think anyone with such a diagnosis must demonstrate dysfunction in each of the systems.) This way, we rule out the depression folks and include the rest of us, which I believe, have the same illness.

But all of this is a waste of time because no one is going to listen to me. And it is all going to change with XMRV illnesses identified.

I also agree with Frickly that in the US, there are actually more likely lots of folks with the depression diagnosis who actually have CFS / ME or whatever you want to call it. I guess I am just going to call it our disease. A CAA study showed about 50% of doctors in US don't believe CFS is a separate illness. I had one doctor say CFS and FM is a "different kind of depression." Another one told a friend of mine that FM is "depression of the body." But I had three that recognized CFS, but they didn't treat it.

So how many in US are told they have depression and just don't ever find a doctor that knows and accepts?

So, I think when XMRV is validated with CFS, I suspect about 30% of people in US with depression will actually have XAND.

Tina

 

[Bob]

The CFSAC can exert pressure to have the Canadian Consensus definition adopted as the standard in the US. In my opinion, this would be helpful.

Personally, I believe that getting the Canadian criteria adopted would be a massive step forwards for us all... I live in the UK so I can't get involved with the CFSAC, but I wish you good luck with it.

It could be argued that the Canadian Consensus definition should be part of the CFSAC Charter. I didn't say that in my testimony, but I haven't submitted it yet. I still have time to revise it.

This seems like a good argument to me!

 

[Jerry S]

Personally, I believe that getting the Canadian criteria adopted would be a massive step forwards for us all... I live in the UK so I can't get involved with the CFSAC, but I wish you good luck with it.

Many outside of the US have submitted written testimony to the CFSAC. Tom Kindlon and Kaspar Ezelius come to mind from last October's meeting.

I totally agree about adopting the Canadian criteria in the US. It would be massive.

 

[Bob]

Hi Tina,

I enjoyed reading your post... it gave me some interesting stuff to think about...

For me, the important issue for our community is not to do with separating ME from CFS, but to do with using a more suitable, or more specific, definition for ME.

Does anyone know how the ICD-10 proposals are intending to diagnose ME and CFS, because until we know this, we can't have a proper discussion about it... we're just going to be talking in circles until we know the facts.
(maybe I'll have to read back through the thread to get the answer to this question, but there's so much to read through, and I can't remember what I've already read!)

Bob

I am not in favor of separating us. I agree with a lot of what Frickly said. I do believe this same illness can be mild, medium and severe.

I agree it can be mild, medium and severe... my own experience changes between all three at different times. But there might be some fatigue illnesses that aren't related to ME or CFS, don't you think? i.e. Just an experience of fatigue without other complicating factors and without 'post exertional malaise'.

...we can have varying symptoms with some of us being affected more in the nerve / pain area (fibromyalgia), some in immune system or metabolic areas (CFS) or neurological (ME). But, fibromyalgia has neurological symptoms and so does CFS, even according to CDC.

That's very interesting... but how have you separated CFS and ME here? Under what criteria?
In the UK, what you describe as CFS would be considered CFS/ME.
I've never heard of ME and CFS being separate before, with different symptoms.

I am thinking of MS. It is the same disease, but each person's MS is slightly different. Some have mild symptoms, some go into remission, some have sever symptoms.

I just think we all, except those with depression, have the same illness. That is why I like neuroendoimmune disease. It covers us all. And, for research purposes, you can separate them as to types. Type 1 has _____________ symptoms with ________________ biological abnormalities. Type 2 has _______________ symptoms with _____________ biological abnormalities.

I like this idea, but you are effectively suggesting the same thing as separating ME and CFS... i.e. subdividing ME/CFS.

So if someone wants to study, they can do just the NEI patients type 1.

Again, I like your idea, but all three categories would need a diagnostic criteria.

I don't see any problem with this. It includes all who have neuro endo and immune dysfunctions. So we all are shown to have illness in these areas. (I think anyone with such a diagnosis must demonstrate dysfunction in each of the systems.) This way, we rule out the depression folks and include the rest of us, which I believe, have the same illness.

My suggestion was to make a separate illness which has fatigue as it's main, or only, component... it wouldn't necessarily be depression but it wouldn't be ME or CFS as we know it now.

But all of this is a waste of time because no one is going to listen to me. And it is all going to change with XMRV illnesses identified.

I know what you mean... that's the problem... no one listens to any of us as individuals...
I agree with your about the XMRV... this is going to define a new illness.

I also agree with Frickly that in the US, there are actually more likely lots of folks with the depression diagnosis who actually have CFS / ME or whatever you want to call it. I guess I am just going to call it our disease. A CAA study showed about 50% of doctors in US don't believe CFS is a separate illness. I had one doctor say CFS and FM is a "different kind of depression." Another one told a friend of mine that FM is "depression of the body." But I had three that recognized CFS, but they didn't treat it.

Yep, it's the same in the UK... many doctors don't believe in CFS/ME. This is why I believe we need a better diagnostic criteria, which excludes psychiatric disorders, which will leading to more effective research, rather than wasting so much money on research relating to psychological interventions.

So how many in US are told they have depression and just don't ever find a doctor that knows and accepts?

We just need so much more biomedical research for ME don't we! Then it will be diagnosed better and once we have a treatment, the disease will get so much more prominence.

So, I think when XMRV is validated with CFS, I suspect about 30% of people in US with depression will actually have XAND.

Yep, I agree!

 

[The Phantom]

Many outside of the US have submitted written testimony to the CFSAC. Tom Kindlon and Kaspar Ezelius come to mind from last October's meeting.

I totally agree about adopting the Canadian criteria in the US. It would be massive.

Yes. You don't have to be a U.S. citizen to submit testimony.

I just realized I forgot to put the second link, to Cort's blog, in my post above: http://www.forums.aboutmecfs.org/content.php?r=106

Also, I just wanted to let everyone know that 2 more great letters to the CFSAC have been added to the save the cfsac thread at http://www.forums.aboutmecfs.org/sho...save-the-cfsac!.

There are more than 2 more hours to submit something. It doesn't have to be long. You could just indicate your support for the Canadian Consensus definition, for example.

CFSAC's email address is: cfsac@hhs.gov

Sorry to repeat--I'm just trying to make it as easy as possible.

 

[Bob]

Many outside of the US have submitted written testimony to the CFSAC. Tom Kindlon and Kaspar Ezelius come to mind from last October's meeting.

I totally agree about adopting the Canadian criteria in the US. It would be massive.

Yes. You don't have to be a U.S. citizen to submit testimony.

OK, thanks, that means that we can all get involved with the project!

 

[usedtobeperkytina]

Bob said' "I agree it can be mild, medium and severe... my own experience changes between all three at different times. But there might be some fatigue illnesses that aren't related to ME or CFS, don't you think? i.e. Just an experience of fatigue without other complicating factors and without 'post exertional malaise'."


Of course, many illnesses have fatigue as a symptom.

The way I see it, we have the info now to distinguish between our illness and depression. Even the CFS diagnostic criteria can distinguish from depression. It includes postexertional malaise as one of the eight, of which you must have four. Notice what it says:

Chronic fatigue syndrome can resemble many other illnesses, including mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders.

It's not uncommon for people to mistakenly assume they have chronic fatigue syndrome when they have another illness that needs to be treated. If you have CFS symptoms, consult a health care professional to determine if any other conditions are responsible for your symptoms. A CFS diagnosis can be made only after other conditions have been excluded.

So, the CDC recognizes a distinction. Too bad 50% of the doctors in US don't. What good is it for there to be a distinction, even in CDC and ICD, if the docs aren't educated in it? If docs aren't going by the way it is now, why do we think things will change with a different label?

I agree our illness could be better defined. But I think the ME criteria is not the best way to go. Number one, it has now been linked with the CFS label, so it has a stigma now. And I think it may be too narrow. I don't think we know enough to say that if you have symptoms of US defined CFS but don't have Canadian ME you have a totally different illness. We just don't know.

Until we know more, I would say all of us with neuro endo and immune abnormalities (testable), after eliminating other known diseases, be lumped as one that is an accurate name, neuroendoimmune dysfunction (disease if you prefer, but syndrome is more accurate at this point- although the word "syndrome" has also been used in a way that is not accurate with other things, thus trivializing real syndromes) with distinguishing as to types for research purposes. I just think if we only have two, and CFS is just fatigue, then many with same illness as ME, just slightly different manifestations, will be left out. In other words, would you lump some of those with your illness, just not exactly meeting ME criteria, into the group that docs are considering to be psychological? So what name do we give for those that meet the ME Canadian but miss just one. But, oops, a year later, the one symptom for ME they were missing now comes.

CFS, has never been just being fatigue for six months, despite what the name implies. CFS, the illness the CDC researched in Incline Village, has always had neurological and immune system abnormalities.

I never had swollen lymph nodes. For first four years, I did not have sore throat. And when I did get it, it was mild.

I do not have the allergies. I don't have MCS.

But, I did have the virus trigger. I had easy bruising, pain, PEM, out of breath, vertigo, fibromyalgia, inability to do math in my head, inability to learn anything that involves multiple steps, candida problems, elevated EBV titers and reactivated parvo, low cortisol and cortisol peaking at the wrong time, high fibrins, headache and nausea at the least stress. I lose my cell phone about one out of five times I leave the house and I go through periods where it is dangerous for me to cook because I leave the stove on. I have put my bank deposit in the mail box. And, it all started with what seemed to be more extreme menstruation symptoms. But it grew gradually over three years until the plummet.

In those years of it growing gradually, did I have a different illness? I say no.

I do think a narrow definition is needed for research. Klimas said this. She said research into AIDS to begin with was a very narrowly defined group, until they found what was consistent in the ones they knew for sure had the disease, whatever that disease was. Once they found the biomarker, they just identified anyone with it as having it, no judgment needed to define it, a test did.

So I guess for research purposes into our illness, the same thing needs to happen. If only our pee were blue, then no one would be left out. If only some of us were clearly dieing from this, then we wouldn't have to wait so long for answers.

I am not coming back to this thread. It is just too depressing for me.

Tina

 

[HowToEscape?]

Is there a category for CFID?

That cagegory makes sense for many people - who have as one symptom is being prone to exhaustion AND and who show immune dysfunction (maybe with tests that haven't been developed yet), but no cause for the immune problem can be found - now. That one might turn out to be the XMRV family. I don't care for the word fatigue, it's misleading -- I think that's a common sentiment here. To me it doesn't feel like normal fatigue, except on a very good day are in a remission. It's a different condition, but I used the word fatigue for a while b/c that's what the term the doc provided and because I had no better word. My doc is no dummy (Derek Enlander), and he's fairly certain his "CFS" patients all have an immune disorder.

Perhaps we can invent and import one of those multiple world mashups from German "the feeling of having the blood drained out" which would no doubt make an impressive and mildly amusing German word, especially if delivered with a thick enough accent to invoke sausages and saurkraut.

 

[HowToEscape?]

How can ME and CFS be 'separated' when neither have a consistent definition either together or apart to start with?

The Scottish guidelines, alone, quote eight different definitions of ME or CFS or ME/CFS or whatever.

It's like trying to separate the yolk and the white in a scrambled egg.

Any definition of anything (whether in medicine, commerce, etc.) should start with a set of common denominators or characteristics that 'things' (patients, in this case) can be grouped by.

The name is almost irrelevant to start with and can be created later on to reflect the main characteristics of the definition.

I'd suggest that the most obvious place to start is with the Canadian Consensus document. If you tick all the boxes, then you have 'it', whatever we call it.

If you tick some but not all of the boxes, then you have something that isn't 'it', but perhaps new definitions can be developed based, again, on commonly occurring sets of characteristics.

It has always mystified me why medics don't simply compile a database of characteristics (such as symptoms, test results, family history, etc.) and look for common groupings. It's a pretty common way to define groups of people for marketing purposes and it isn't really rocket science.

Hm. This disease(s) is going to be hard to tack down to an exact set of symptoms. Mine, and I think many others vary over time. Sore throat? No more than anyone else. Muscle pain? Sure... but probably secondary to lack of excercise etc. I had rapid onset after a flu-like illness and suddenly developed case of Hashimoto's - there's the immune component. But other symptoms vary, so if the list were modeled after me during one stretch I'd hit all the boxes then, and not fit the criteria 6 months later - even if I were in worse overall shape.

The problem is we haven't had serious, honest, large scale study done on a group defined with the interest of looking for something other than depression (which is more or less treatable already) or malingering (which describes Reeves, who was malingering into a large paycheck for not doing his job). There could be one basic disease which affect people a bit differently. Let's say it's XMRV; not all people respond to the virus with the same pathology, and the same person could have different symptoms at different times.

I don't think this is going to fit a linear checklist such as "patient exhibits a circular red rash between 1/2-1", fever, sweating and a lluminescent purple tongue". Such a disease is easy to define. It probably be more like two or three core symptoms plus some of a larger set. e.g "must have PEM, cognitive imparment, and mitochondrial trouble plus at least 3 of <add the laundry list here>. Then it will be neccesary to see if the patterns look like distinct diseases with overlapping symptoms OR one fundamental demon with many heads. <ugh>.

 

[HowToEscape?]

I never had a CFS diagnosis, I was diagnosed with CFIDS. I have chronic immune dysfunction. I also got an advanced Lyme diagnosis and a ME diagnosis and a "civilian with Gulf War Syndrome" diagnosis and a micoplasma diagnosis. As well as POTS/NMH and Hashimoto's.

When I was diagnosed with CFIDS, there was no such thing as just CFS, at least it was not the same thing. It was only in the next few years after I got sick that there was a push to drop the Immune Dysfunction from the name and destroy all credibility of the patients.

I believe CFIDS and ME are the same disease. I do not believe CFS is. CFS can be caused by many things. Just being chronically rundown is not the same as having immune dysfunction and neurological problems.

We really need to get away from the stupid Fatigue word.

We really need to get away from the stupid Fatigue word.

Amen. EVERYONE who was not personally familiar with it responds with "Isn't that like depression?" or "I know how you feel, I get like that sometimes - I worked a 100hr week last month and I was knocked out for 2 days after that". Suppressing the urge to smack them with a feeble imitation of a right hook, shouting NO, YOU HAVE NO FREAKING CLUE WHAT I'M DEALING WITH!! takes a bit of discipline.

I can remember doing century-and-a-half bike rides and the occasional 24hr workday and this feels nothing like those. I know of no one word for it; maybe this is how a 9 volt robot trying to run off a watch battery would feel.

 

[Bob]

Surprisingly, this discussion thread has challenged my opinions more than any other discussion thread on this forum... I've been trying to get my head around all of the points of view, and ideas, expressed... The discussion has been very thought provoking, and my opinions have been really challenged in certain areas...

Originally I thought that we should define ME by the Canadian Criteria, and that there should be a new category of 'Chronic Fatigue' or 'CFS', where all the patients who fall outside the Canadian criteria would fall into...

But after reading through this thread, my opinions have been challenged and I'm not so certain about my original opinions...

I still think that the Canadian Criteria are essential for use in research and for moving our cause forwards... it is only by narrowing down patients into a more specific cohort that we will ever make any progress in understanding and treating ME...

But now I'm not so sure about having a scrapheap 'fatigue' or 'CFS' diagnosis, but I think it would be better to have one disease with subsets of that disease...

The reason for this thinking is: What happens to those patients who do not manage to get an ME diagnosis because they have mild ME? They get thrown onto a scrapheap CFS diagnosis where they are subjected to continued disbelief, ridicule and psychological treatments. It would be cruel to split these patients off. What happens to those of us whose doctors are incompetent or just don't believe in ME?... they will get a CFS diagnosis, no matter what their symptoms are, and they will get treated like they have a personality disorder, and maybe treated even worse than we all get treated today...


Because of these issues, I'm coming round to the following idea as being the best way forward for our community:

...I would favor Neuroendoimmune disease and then list them as "A" "B" "C", etc, the way they do hepatitis.

Until we know more, I would say all of us with neuro endo and immune abnormalities (testable), after eliminating other known diseases, be lumped as one that is an accurate name, neuroendoimmune dysfunction (disease if you prefer, but syndrome is more accurate at this point- although the word "syndrome" has also been used in a way that is not accurate with other things, thus trivializing real syndromes) with distinguishing as to types for research purposes. I just think if we only have two, and CFS is just fatigue, then many with same illness as ME, just slightly different manifestations, will be left out. In other words, would you lump some of those with your illness, just not exactly meeting ME criteria, into the group that docs are considering to be psychological? So what name do we give for those that meet the ME Canadian but miss just one. But, oops, a year later, the one symptom for ME they were missing now comes.

It was Tina's thoughts, in the following message, that challenged my thinking on the subject...
She lays out some complex ideas that I had to take time to read to get to grips with:

Of course, many illnesses have fatigue as a symptom.

The way I see it, we have the info now to distinguish between our illness and depression. Even the CFS diagnostic criteria can distinguish from depression. It includes postexertional malaise as one of the eight, of which you must have four. Notice what it says:

Chronic fatigue syndrome can resemble many other illnesses, including mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders.

It's not uncommon for people to mistakenly assume they have chronic fatigue syndrome when they have another illness that needs to be treated. If you have CFS symptoms, consult a health care professional to determine if any other conditions are responsible for your symptoms. A CFS diagnosis can be made only after other conditions have been excluded.

So, the CDC recognizes a distinction. Too bad 50% of the doctors in US don't. What good is it for there to be a distinction, even in CDC and ICD, if the docs aren't educated in it? If docs aren't going by the way it is now, why do we think things will change with a different label?

I agree our illness could be better defined. But I think the ME criteria is not the best way to go. Number one, it has now been linked with the CFS label, so it has a stigma now. And I think it may be too narrow. I don't think we know enough to say that if you have symptoms of US defined CFS but don't have Canadian ME you have a totally different illness. We just don't know.

Until we know more, I would say all of us with neuro endo and immune abnormalities (testable), after eliminating other known diseases, be lumped as one that is an accurate name, neuroendoimmune dysfunction (disease if you prefer, but syndrome is more accurate at this point- although the word "syndrome" has also been used in a way that is not accurate with other things, thus trivializing real syndromes) with distinguishing as to types for research purposes. I just think if we only have two, and CFS is just fatigue, then many with same illness as ME, just slightly different manifestations, will be left out. In other words, would you lump some of those with your illness, just not exactly meeting ME criteria, into the group that docs are considering to be psychological? So what name do we give for those that meet the ME Canadian but miss just one. But, oops, a year later, the one symptom for ME they were missing now comes.

CFS, has never been just being fatigue for six months, despite what the name implies. CFS, the illness the CDC researched in Incline Village, has always had neurological and immune system abnormalities.

I never had swollen lymph nodes. For first four years, I did not have sore throat. And when I did get it, it was mild.

I do not have the allergies. I don't have MCS.

But, I did have the virus trigger. I had easy bruising, pain, PEM, out of breath, vertigo, fibromyalgia, inability to do math in my head, inability to learn anything that involves multiple steps, candida problems, elevated EBV titers and reactivated parvo, low cortisol and cortisol peaking at the wrong time, high fibrins, headache and nausea at the least stress. I lose my cell phone about one out of five times I leave the house and I go through periods where it is dangerous for me to cook because I leave the stove on. I have put my bank deposit in the mail box. And, it all started with what seemed to be more extreme menstruation symptoms. But it grew gradually over three years until the plummet.

In those years of it growing gradually, did I have a different illness? I say no.

I do think a narrow definition is needed for research. Klimas said this. She said research into AIDS to begin with was a very narrowly defined group, until they found what was consistent in the ones they knew for sure had the disease, whatever that disease was. Once they found the biomarker, they just identified anyone with it as having it, no judgment needed to define it, a test did.

So I guess for research purposes into our illness, the same thing needs to happen. If only our pee were blue, then no one would be left out. If only some of us were clearly dieing from this, then we wouldn't have to wait so long for answers.

I am not coming back to this thread. It is just too depressing for me.

Tina

Thanks Tina, and to everyone else, for taking the time to express your opinions... all your thought provoking messages have had a big effect on me.

 

[Jerry S]

Is there a category for CFID?

There has never been a case definition for CFIDS that I know of. The CDC says in its CFS glossary:

chronic fatigue and immune dysfunction syndrome (CFIDS)
A synonym for chronic fatigue syndrome used by some patients and physicians. It should be stressed, however, that no immune dysfunction or aberration has been persuasively linked to chronic fatigue syndrome.

No immune dysfunction??? This is the problem with the CDC's grab bag definitions. Note the use of the weasel word "persuasively." Persuasive to whom, one asks?

 

[Bob]

Can we just clear something up for this thread please...

I think that when we all refer to each other as having ME or CFS or CFIDS, we are all agreed that we, on this forum, all have the same, or a very similar, disease, and we have very similar experiences of illness...

If anyone on this forum has been diagnosed with CFS rather than ME, then it makes no difference... it is the type of illness we are discussing, not the different names that we've been given by our various ignorant doctors, in our many different countries. (In England, CFS and ME are identical, and the single disease is referred to as CFS/ME according to our official NICE guidelines).

If ME and CFS were separated, redefined, and given different diagnostic criteria, then we'd all have to be re-diagnosed anyway (i.e. get a fresh diagnosis), whatever our present diagnosis.

Some people on this thread have complained that people with fatigue, chronic fatigue, or CFS don't understand what people with ME experience,
but what they mean is that people with simple fatigue, or simple burn-out, don't understand what all of us, on this forum, who experience severe symptoms, have to put up with in our lives, whether we've been diagnosed with ME or CFS or whatever.

We are all getting easily confused when we use the terms 'fatigue', 'chronic fatigue', or 'CFS' loosely.

I think I can safely say that, on this forum, we can all agree that we all have very similar, or identical, experiences and very similar, or identical, illnesses.


Like Mithriel said:

The diagnosis means nothing. Most of us in the UK have a diagnosis of somatisation disorder even if the doctor calls it CFS or ME because that is what the patient likes.

 

[Dx Revision Watch]

ICD-11 Alpha Draft due for release in May

Does anyone know how the ICD-10 proposals are intending to diagnose ME and CFS, because until we know this, we can't have a proper discussion about it... we're just going to be talking in circles until we know the facts.

Hi Bob,

The Alpha Draft for ICD-11 is scheduled for release between 10 May and 17 May. It is my understanding from an April ICD meeting Agenda that there will be a launch and a press release.

Note that this is the revision of ICD-10 as used in the UK, Europe and many other countries - not the revision of the version of ICD currently used in the US for which ICD-10-CM (the US clinical modification) is currently being developed.

ICD-10-CM is scheduled for implementation in October 2013.

ICD-11 is expected to be finalised for dissemination in 2014+.

I am intending to compile a posting in the next few days about the impending release of ICD-11 Alpha Draft and I'll be starting a new thread specifically for this.

The revision of ICD-10 and the drafting of ICD-11 is being carried out via the i-CAT - the Initial ICD-11 Collaborative Authoring Tool.

This is a wiki-like platform that will be accessible to all, ie it will be viewable by all.

But there will be varying levels of editing authority which will initially be restricted to ICD Classification Experts, ICD Secretariat, the ICD-11 Revision Steering Group, Managing Editors of the various Topic Advisory Groups (TAGs) responsible for revision of the various chapters, members of the TAGs and the reviewers recruited by the TAG Managing Editors to review proposals or assist with the drafting of content.

I don't want to get too deeply into this, tonight, because, as I say, I'll be compiling a post shortly.

I am anticipating that the i-CAT platform will also be launched at the same time as the Alpha Draft.


The demo and training iCAT platform:


If you go to this ICD-11 Revision site: https://sites.google.com/site/icd11revision/home/

then to this page:

https://sites.google.com/site/icd11revision/home/icat

and click on this link:

The demo and training iCAT platform: http://icatdemo.stanford.edu/

this will load the i-CAT Demo and Training Platform

where you can see what the i-CAT will look like. (It may take a little while to load, so be patient.)

If you'd rather watch the ICD Revision YouTube videos, they are all embeded on this page of my Dx Revision Watch site:

http://dxrevisionwatch.wordpress.com/icd-11/icd-11-sub-page-2/

you can watch them back to back in around 30 minutes.


Once you are into the i-CAT demo, you can poke about:

Click on the ICD Content Tab

Open the + next to ICD Categories

Open the + next to 06 VI Diseases of the nervous system

Open the + next to G90-G99 Other disorders of the nervous system

Open the + next to G93 Other disorders of brain

Click on G93.3 Postviral fatigue syndrome


On the Right of the screen

Click on the Definition Tab if it is not already selected

You should see the following:

ICD Code G93.3

ICD Title Postviral fatigue syndrome

Definition (Text box currently unpopulated)

For a Glossary click on the ? of Definition ?

(this is a general page that sets out how content is going to be populated within ICD-11)

(the URL for this page is: http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html#definition)

There are no Definitions populated in this demo for the entry for Postviral fatigue syndrome.


Note that until the ICD-11 Alpha Draft is released, it cannot be determined how far the various Topic Advisory Groups have progressed with populating content according to the ICD Content Model document.

Some External definitions have been entered. (Note these may have been imported from other ICD affiliate publications as part of the initial "Start up" list which has been used to kick start the revision process for all chapters or just being used as examples. So again, we need to wait until the draft comes out to see how much content has been entered so far into the Alpha Draft.)

External definitions:

Three definitions are currently displaying

A syndrome of unknown etiology. Chronic fatigue syndrome
(CFS) is a clinical diagnosis characterized by an unexplained
persistent or relapsing chronic fatigue that is of at least six
months duration, is not the result of ongoing exertion, is not
substantially alleviated by rest, and results in substantial reduction
of previous levels of occupational, educational, social
or personal activities. Common concurrent symptoms of at least
six months duration include impairment of memory or concentration,
diffuse pain, sore throat, tender lymph nodes,
headaches of a new type, pattern, or severity, and nonrestorative
sleep. The etiology of CFS may be viral or immunologic. Neurasthenia
and fibromyalgia may represent related disorders. Also known as
myalgic encephalomyeltis.

Ontology ID UMLS/NC12007_05
E


distinctive syndrome characterized by chronic fatigue, mild fever,
lymphadenopathy, headache, myalgia, arthralgia, depression, and
memory loss: candidate eitiological agents include Epstein-Barr and
other herpesviruses.

Ontology ID UMLS/CSP2006


A syndrome characterized by persistent or recurrent fatigue,
diffuse musculoskeletal pain, sleep disturbances, and subjective
cognitive impairment of 6 months duration or longer. Symptoms
are not caused by ongoing exertion; are not relieved by rest; and
result in a substantial reduction of previous levels of occupational,
educational, social or personal activities. Minor alterations of
immune, neuroendocrine, and automatic function may be
associated with this syndrome. There is also considerable
overlap between this condition and FIBROMYALGIA. (From Semin
Neurol 1998;18(2):237-42: Ann Intern Med 1994 Dec 15;121(12):
953-9)

Ontology ID UMLS/MSH2008_2
008_02_04


Very few Tabs have been populated in this demo version of the i-CAT

Terms

Synomyms Not yet populated

Inclusions Benign myalgic encephalomyeltis

Exclusions Not yet populated

---------------

You can go back to the ICD Content Tab list and open the page for Chapter 5 (V) Mental and behavioural disorders.

Then open the + for F40-F48 Neurotic, stress-related and somatoform disorders

Then open F45 Somatoform disorders

where the existing categories in ICD-10 Chapter V: Somatoform disorders are listed. Note they are listed as they currently appear in ICD-10.


It should be evident that there is the potential for considerably more content to be included in ICD-11 than there is in ICD-10.


So when I've put together my posting in a new thread, I will post the URL, here, and when the ICD-11 Alpha Draft is launched, I will also post a heads-up, here.

I'd like to stress that the process is not the same as the DSM-5 revision process has been; that it isn't possible to say at the moment how far the draft will have progressed at the point it is released, and I cannot stress too strongly that until the draft is released between 10 and 17 May, we do not have sufficient information to say what is currently being proposed for the classification of "Chronic fatigue syndrome".

All three Volumes of ICD-11 will integrate and be available online.

It isn't known yet whether CFS will be classified within Volume 1 (at the moment, in ICD-10, it is indexed only, in Volume 3: The Alphabetical Index to G93.3 and it isnt included in the Tabular List of ICD-10).

It isn't known whether it will be proposed to classify CFS at all, or to classify it under G93.3 or to place it in another chapter. There is currently no evidence of any intention by any of the Topic Advisory Groups to place it within Chapter 5.


I apologise if the following has already been set out within this thread:

Several countries have developed their own “Clinical Modifications” (CM) of ICD. Canada, for example, uses an adaptation called ICD-10-CA, with a version published for 2009. Germany uses a version called ICD-10-GM.

The US currently uses a Clinical Modification based on ICD-9. But instead of moving onto ICD-11, once the revision of ICD-10 has been completed, the US will be implementing a Clinical Modification of ICD-10 called ICD-10-CM, in October 2013.

There are disparities between some of the proposed codings for the forthcoming US Clinical Modification and those in the current ICD-10: for example, the classification and codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and Chronic fatigue syndrome differ between ICD-10 and the current proposed codings and classifications for the forthcoming US ICD-10-CM.

Current proposals for the US Clinical Modification ICD-10-CM, scheduled for implementation in October 2013, propose classifying Chronic fatigue syndrome at R53.82.

For current proposals for US modification ICD-10-CM see:
http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM

ICD-10-CM

"The proposed U.S. classification ICD-10-CM (2009 Update) separates CFS and Postviral fatigue syndrome into mutually exclusive categories. “Chronic fatigue, unspecified | Chronic fatigue syndrome not otherwise specified” appears under R53.82. “Postviral fatigue syndrome | benign myalgic encephalomyelitis” appears under G93.3 [52]The Chronic Fatigue Syndrome Advisory Committee (CFSAC) had previously recommended CFS to be placed under the same neurological code as ME and PVS, G93.3. [53]"

---------------

(See also historic CDC document: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases, March 2001 proposals, now superceded as per Wikipedia.)


Resources for US Clinical Modification:

CDC site: International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)
2010 update of ICD-10-CM is now available and replaces the July 2009 version. [1]

[1] Although this release of ICD-10-CM is now available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. The effective implementation date for ICD-10-CM (and ICD-10-PCS) is October 1, 2013. Updates to this version are anticipated prior to implementation of ICD-10-CM.


You can see how the current codes for PVFS, ME and CFS in ICD-10 are set out on these two pages on my website:

http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/2/

----------------

Proposals for ICD-10-CM (scheduled for October 2013):

This is from the Zipped PDF from the CDC site here:

http://www.cdc.gov/nchs/icd/icd10cm.htm#10update


ICD-10-CM

G93 Other disorders of brain

G93.0 Cerebral cysts
Arachnoid cyst
Porencephalic cyst, acquired
Excludes1: acquired periventricular cysts of newborn (P91.1)
congenital cerebral cysts (Q04.6)

G93.1 Anoxic brain damage, not elsewhere classified
Excludes1: cerebral anoxia due to anesthesia during labor and delivery
(O74.3)
cerebral anoxia due to anesthesia during the puerperium (O89.2)
neonatal anoxia (P28.9)

G93.2 Benign intracranial hypertension
Excludes1: hypertensive encephalopathy (I67.4)

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Excludes1: chronic fatigue syndrome NOS (R53.82)
-------------------

ICD-10-CM Tabular Page 1165 2010

R53 Malaise and fatigue
R53.0 Neoplastic (malignant) related fatigue
Code first associated neoplasm
R53.1 Weakness
Asthenia NOS
Excludes1: age-related weakness (R54)
muscle weakness (M62.
senile asthenia (R54)

R53.2 Functional quadriplegia
Complete immobility due to severe physical disability or frailty
Excludes1: frailty NOS (R54)
hysterical paralysis (F44.4)
immobility syndrome (M62.3)
neurologic quadriplegia (G82.5-)
quadriplegia (G82.50)

R53.8 Other malaise and fatigue
Excludes1: combat exhaustion and fatigue (F43.0)
congenital debility (P96.9)
exhaustion and fatigue due to:
depressive episode (F32.-)
excessive exertion (T73.3)
exposure (T73.2)
heat (T67.-)
pregnancy (O26.
recurrent depressive episode (F33)
senile debility (R54)

R53.81 Other malaise
Chronic debility
Debility NOS
General physical deterioration
Malaise NOS
Nervous debility
Excludes1: age-related physical debility (R54)

R53.82 Chronic fatigue, unspecified

Chronic fatigue syndrome NOS
Excludes1: postviral fatigue syndrome (G93.3)

R53.83 Other fatigue
Fatigue NOS
Lack of energy
Lethargy
Tiredness

 

[justinreilly]

It has always mystified me why medics don't simply compile a database of characteristics (such as symptoms, test results, family history, etc.) and look for common groupings. It's a pretty common way to define groups of people for marketing purposes and it isn't really rocket science.

A grant app was made to NIH in the late 1980s to do state of the art biometrics analysis like this- feed in all the data and see what groupings and correlations pop up mathematically. This would have clarified a lot. Of course this app, along with every other one for years, was denied. I agree that a study like this should be done.

 

[justinreilly]

ME is a Discrete Disease with a Unique Presentation (not a wastebasket of CF)

I was ill before CFS was invented and I was diagnosed with ME. We knew what disease we were talking about and research took off in the early eighties. It was caused by a virus, came in epidemics and sporadically, was neurological and was made worse by exercise.

Then there was a series of body blows.

HIV was discovered and many of the researchers moved to that, where the money was.

The CDC refused to admit that the lake Tahoe outbreak was ME and invented CFS which didn't adequately describe the epidemic that started it.

The experts in enteroviral disease, mainly polio were ageing and no new researchers were interested so knowledge was lost - many of them have struggled on fighting for us until they died.

Wessely and his mates sat down one day, said ME was CFS, which they defined differently from the CDC and instead of laughing at them - you can rename an illness, but rename AND give it different symptoms, I ask you... it was accepted at th espeed of light. They ignored the epidemics and all he previous research and expertise. This was not done on the basis of any new insight, discovery or scientific advance, it was purely political The fact they study a different population from the US studies has muddied all CFS research and confused doctors of good will.

In the UK, ME and CFS are not the same at all. People with ME are told they have CFS, but many, many people are told they have CFS who DO NOT have ME. (It is not exactly the same in the US as their definition of CFS was different)

The UK forums are full of people who do not have ME. They are not less ill - some of them are sicker than the average ME sufferer - but ME - no.

Here in the UK we are always being confronted by people who "had a touch of ME" (ME has simply become the patient's preferred name so doctors will use it.) They will happily tell you how they got better because they tried such and such instead of giving in to it like you did.

Many of the people with CFS get on fine at the clinics and are often part of local groups. They don't think much of activism. I think Wessely is right and most people with CFS will not have XMRV. Every time he changed the definition the numbers who had it went up by a factor of ten so it is possible that only one in a hundred would have had ME in the old days.

Mithriel

EGG - ZACT - LEE!!!

ME is a coherent, discrete disease, understanding of which has been intentionally muddied by CDC by using the name 'CFS' and creating the Reeves definition (and to a lesser extent the Fukuda criteria) and by Sharpe, Wessely et al. by creating the Oxford 'CFS' definition which is no more than idiopathic chronic fatigue (the wastebasket of chronic fatigue of unknown cause).

We have to always remember this. There's no consensus on the cause yet, but ME (the disease we are all talking about) is a discrete disease with a unique, quite consistent presentation that is quite easily recognized by an experienced clinician. The supposed confusion about whether there is any coherence is a con job by Wessely et al. and CDC to create confusion and doubt which serves to divide us and make it much easier to deny us funding for research and treatment.

ME is basically post-viral fatigue and we've had post-viral fatigue for as long as we've had viruses. Cheney has a chart of ME attack rates. It starts very slowly and sporadically for decades- basically the recognized cluster outbreaks along with a smattering of sporadic cases. Then in the late 1970's the attack rate starts picking up steam and goes through the roof, peaking in about 1984 then slowly declining- a classic viral attack rate pattern. The chart looks similar to the one for AIDS and at the same time.

So, as Cheney says, 'something happened in the late 70s' that caused the relatively rare ME or post-viral fatigue to explode. It was not media driven hysteria as some would like us to believe- internists were logging large numbers of patients with the disease in 1983 over a year before the first ever media report on the disease in the US.

It was either a new chemical or, more likely, a new virus or combination of viruses. The most likely candidate is one or more retroviruses since they cause lifelong (or fatal) neuro-immune diseases and immune cancers (like the previously exceedingly rare B-cell lymphomas very strongly associated with ME). It could be one or more of the following: XMRV, DeFreitas' retrovirus, Grossberg's JHK, Martin's retrovirus-like stealth virus, HHV-6 or an unknown retrovirus.

Note: I'll note that Byron Hyde has a different view of the situation and claims that much or most of what is labeled either CFS or ME is actually occult (hidden or hard to identify) disease which he can usually pinpoint and diagnose. His view is different from all other ME experts. I can't discount him though because he seems extremely bright and knowledgeable. I confess I don't know how to reconcile his view with mine, so I'll just note that there's this leftover puzzle piece to my 'neat and straightforward' explanation of ME.

 

[Dr. Yes]

From Suzy:

ICD Code G93

(....)

Some External definitions have been entered. (Note these may have been imported from other ICD affiliate publications as part of the initial "Start up" list which has been used to kick start the revision process for all chapters or just being used as examples. So again, we need to wait until the draft comes out to see how much content has been entered so far into the Alpha Draft.)

External definitions:

(...)
The etiology of CFS may be viral or immunologic. Neurasthenia
and fibromyalgia may represent related disorders. Also known as
myalgic encephalomyeltis.

What a strange place for "neurasthenia" to pop up. Does the WHO not consider that a psychological disorder? Because if they do, then by their own regulations they cannot use it to describe a physical disorder like ME, right? Hope that one doesn't carry over into the Alpha draft.

 

[justinreilly]

ICD 10CM is the Oxford Definition on Crystal Meth

R53.82 Chronic fatigue, unspecified [note: not in ICD-10]

Chronic fatigue syndrome NOS [note: ‘NOS’ is new; the listing for ‘CFS’ in ICD-9 does not say ‘NOS’ ]
Excludes: postviral fatigue syndrome (G93.3)

So the ICD 10CM draft is that "CFS" is defined as idiopathic chronic fatigue not caused or triggered by a virus, Not Otherwise Specified. This is the Oxford Definition on Crystal Meth. I'm surprised they didn't call it "Benign Crazy Lazy Fatigue-type Thing, NOS" and say it "Excludes: actual diseases" just to clarify.

Vomit.