ME and cfs to be classified as seperate illnesses

[awol]

I think a general problem with diagnosis is the fact that our symptoms shift over time. At a specific time if you look at my symptoms, I may well not qualify for ME if the definition is rigid. However over time I would. Doctors often focus on what's wrong with you NOW, and have difficulty with the long, complicated history. Therefore, distinguishing too much between ME and CFS is potentially dangerous.

Instead I think it should be seen as a SPECTRUM disorder, where people move up and down the scale, and have different subtypes, but in general need to be looked at as a single, complex group for some purposes, if not all. Does this make any sense?

 

[Mithriel]

ME before CFS could be diagnosed by the abnormal response to exercise and the fact that symptoms are variable in a way that is not seen in other illnesses. It is not the case that ME is more severe than CFS.

The severity may vary over time, as may the individual symptoms but the character of the disease stays the same just the way it does in MS, rheumatoid arthritis and many other illnesses.

If doctors looked for PEM, autonomic dysfunction and all those other symptoms we share, even did tests of immune function and mitochondrial function, then they would know what we had even if the severity and symptoms varied with time.

It is the confusion brought about by the lack of specificity of Fukuda definition and the other definitions of CFS that cause the problem.

The Canadian guidelines address some of these issues.

Mithriel

 

[awol]

If doctors looked for PEM, autonomic dysfunction and all those other symptoms we share, even did tests of immune function and mitochondrial function, then they would know what we had even if the severity and symptoms varied with time.

Well you assume that these things are measured at all, and are measured when they show something. I am reminded of my electrocardiogram: Was having on and off very severe heart rhythm disturbances. But when I went for the test the heart decided to behave normally. As for the tests mentioned above, noone has ever bothered doing those for me, and now I seem like I might be going into remission, so even if they were done they would not show what they would have a few months ago. Does this mean doctors get to say "see, you weren't really sick"?

PEM - still there, but now increasingly difficult to differentiate from mere deconditioning
AD - fading
Immune and mitochondrial - only measured by doctors who know something, and not all of us have access to one of these.

... you get the idea. This talk of chopping up makes me nervous, that's all. I would far prefer to see a distinction based on something real, like XMRV+ vs XMRV-

 

[Bob]

awol, I share your concerns, and you've made a lot of sense...
my obvious symptoms change massively from when I'm feeling relatively well, to when I'm at my worst...
my opinion is that we should introduce tighter definitions at least for research purposes, and if this means changing the definitions for diagnosing the general public, then I'd happily go along with that...
yes, many people will definitely miss out on an ME diagnosis, because doctors will be unwilling to put any effort into giving an ME diagnosis...
but there isn't any treatment available for ME anyway... so would it make much difference to us what diagnosis we have, in the short term?.. although I recognise that there will be a lot of unhappiness and distress for those who only get a CFS diagnosis.
but if tighter definitions mean that research would be more effective, and successful diagnostic tests and treatments were developed, then we would all benefit from that, no matter what our prior diagnosis was.

I agree that it would be unpleasant to throw many from our community onto the CFS scrapheap,
so some of us have suggested having, for example, an ME Type I, ME Type II, and an ME Type III, all based on separate diagnostic criteria... Or it wouldn't have to be called 'ME', but could be any agreed name.

(Not that we'd ever be listened to anyway!)

But because of the research implications, and the long-term benefits to our community, I would definitely support using tighter diagnostic criteria.
Personally, I think it should be our number one priority to get our governments to use better definitions, at least for research purposes.

 

[Mithriel]

Many illnesses are diagnosed clinically, based on a unique set of symptoms. If we had a proper definition of symptoms and signs then doctors could use that. The abnormal response to exercise is the main one.

ME was a recognised illness before CFS was invented. The psychologists and the CDC have caused confusion but it is still a recognisable illness.

Deconditioning and the PEM of ME are completely different. The experiments at the Pacific U lab prove that.

Just because no one will do the tests doesn't mean that tests don't exist.

My friends with MS get annoyed because it always seems to be that the day of the test everything is fine. The difference with them is that the doctors often believe they are getting the symptom even if the test shows nothing on the day.

Sorting out who has ME is vitally important because it is lifelong. Even if someone is in remission they are always at risk of relapse so they must always be careful to stay within their exercise envelope. Living a normal life is fine, but suddenly attempting a marathon is not such a good idea.

It is usually obvious who has ME/CFS. If doctors were trained properly they could diagnose people the way they do with other diseases.

Since the "treatment" for CFS is exercise, the very thing that makes ME worse we can't afford to delay until XMRV testing is available. Every day that passes could be sending another person into a lifetime of disability.

People who have other illnesses which are being called CFS may actually be helped by CBT and GET or at least, not be harmed.

I appreciate that people are afraid that they have CFS but not ME so will be abandoned but they should be getting a proper diagnosis of what actually is wrong with them which the current status of "CFS" does not do. Just because some people being diagnosed with CFS do not have ME doesn't seem to be a good reason for not trying to get ME diagnosed properly. Maybe if the difference with ME was made clear the other illnesses under CFS would be easier to disentangle.

Assuming everyone who is told they have CFS has the same illness doesn't help anyone.

Mithriel

 

[Bob]

Hi Mithriel,

I agree with you... and in the long-term a better diagnostic criteria would transform the way our illness is viewed and treated... for the better...
I think it would be the single most important thing that we could do for our community right now...
But in the short-term, a lot of doctors will refuse to diagnose ME, a lot of patients will get thrown on the scrap-heap (well, except we already are on the scrap heap), and there's going to be a lot of distress for thousands of ME sufferers (like there already is), as they fight to get an ME diagnosis...
But I agree that the advantages of using a new diagnostic criteria will far outweigh the disadvantages...by a million miles!
It's the only way to go... I really believe that if we don't do this then we will get nowhere with ME research, ever! (except when we get some definite results with XMRV).

 

[justinreilly]

ME before CFS could be diagnosed by the abnormal response to exercise and the fact that symptoms are variable in a way that is not seen in other illnesses. It is not the case that ME is more severe than CFS.

The severity may vary over time, as may the individual symptoms but the character of the disease stays the same just the way it does in MS, rheumatoid arthritis and many other illnesses.

If doctors looked for PEM, autonomic dysfunction and all those other symptoms we share, even did tests of immune function and mitochondrial function, then they would know what we had even if the severity and symptoms varied with time.

It is the confusion brought about by the lack of specificity of Fukuda definition and the other definitions of CFS that cause the problem.

The Canadian guidelines address some of these issues.

Mithriel

Can I ask everyone to please be specific about what "CFS"- British or American to which you are referring when you say "CFS", because not being precise causes the confusion Sharpe and co. intended when they came up with the bogus Oxford "CFS" definition.

 

[justinreilly]

Garbage Goes in the Garbage

Bob,

I've got to disagree with you on some things. As I see it there was ME in outbreaks at least since the 1930's. Then it exploded in the late 70s and early 80s and was given the inappropriate name "CFS" by CDC. The name ME was still used by WHO and in the UK and the vast majority of the rest of countries.

In 1991 Sharpe and co-conspirators in the UK came up with their Oxford "CFS" definition which is nothing more than what has always been called (and in the US is still called) Idiopathic Chronic Fatigue (Chronic Fatigue of unknown cause). This was a transparent attempt to create confusion and bad science so we could be oppressed.

Therefor we should abandon the term "CFS". The disease we discuss on PR, namely ME or US "CFS" should be called "ME" (or "ME/CFIDS"). The bogus Oxford definition has to be abandoned. These people have what has always been called Idiopathic Chronic Fatigue; this is what it needs to be called.

In England, as far as I understand, for practical purposes, there is one condition and it is officially known as CFS/ME, as defined and diagnosed by the NICE guidelines, which I think uses the Fukuda definition (?)

UK NICE "CFS" is not defined by Fukuda (which defines US "CFS"), it is defined as Oxford definition + PEM.

...everyone in the USA is given a CFS diagnosis, no matter what their symptoms are...
Bob

I don't know what you mean by this. You have to meet Fukuda to be diagnosed with CFS in the US. That is, ME = US "CFS". If you have Oxford UK "CFS" you get diagnosed with Idiopathic Chronic Fatigue or just the symptom Chronic Fatigue (as has always been done here and used to be done in the UK).

I suggest that ME Type I, ME Type II and ME Type III might be a better way forwards for our community...
ME Type I could use the Canadian definition...
ME Type II could use the existing UK/USA definition... and,
ME Type III could use an even more relaxed definition such as Oxford. (This might even keep the psychiatrists happy about the proposed changes because Oxford can include purely psychiatric patients).

Any thoughts?

Oxford is garbage. Garbage goes in the garbage can.

This is like saying "well we should give people who have Idiopathic Chronic Fatigue a diagnosis of MS or Lupus, because this will make it easier for them to get benefits." This just perpetuates confusion which puts more of the Cluster Fuck in "CFS".

I think that we should just use myalgic encephalopathy no ambiguity patients either confprm to the canadian criterea or not.that has been put together by clinicians .the others to a greater or lesser extent by psychiatrists

Exactly!! Simple and accurate! Much less opportunity for the evil-doers to create smoke screens.

The existing official ME/CFS diagnosis presently uses a vague CFS definition, so ME is already a meaningless term (unless we specifically state that we are referring to ME using the Canadian criteria).
My proposal would mean not having to reject vast swathes of CFS/ME patients onto the scrapheap, but it would be inclusive of everyone, using a meaningful and practical spectrum of definitions...

I agree that the psychiatric view of our illness has been our worst enemy over the years... but it is not the Oxford definition that is our enemy, it is the psychiatrists/psychologists who have hijacked our disease, for their own ends, who are our enemies. I think that using a spectrum of diagnostic criteria would not place us in greater danger, but would help distinguish our separate conditions, thus helping research efforts, not hindering them.

I have concerns that many of us would not get a diagnosis at all based on the stricter Canadian criteria, purely because the doctors won't diagnose ME using a stricter diagnosis (due to incompetence and ignorance)...
But if we were to get an ME Type II diagnosis, using the Fukuda definition for example, then at least it would be a step on the ladder to proper recognition... and we could then firm up our diagnosis to Type I at a later date.

This would also mean that people who suffer from pure fatigue also get a label and aren't abandoned into some twilight world of quack psychological treatments...

ME is only a 'meaningless term' to the extent that UK "CFS" has been adopted and then incorporated into the term "ME/CFS" or "CFS/ME". Previous to this ME had an accurate, coherent meaning. We have to reverse this by cleaning up our terminology and rejecting Oxford "CFS".

Of course our worst enemies are the Wessely school. Probably the greatest weapon they use to hurt us is the Oxford "CFS" definition. Both the Wessely school and their weapons (the 'weaponized' terminology, fake science and lies) must be driven into the sea.

 

[Frickly]

Mithriel, with all due respect.....I have no fear that I have CFS and not ME and willing to bet that most of my American friends with this disease will feel the same. Since I live in the US I am diagnosed with CFS.

I appreciate that people are afraid that they have CFS but not ME so will be abandoned but they should be getting a proper diagnosis of what actually is wrong with them which the current status of "CFS" does not do. Just because some people being diagnosed with CFS do not have ME doesn't seem to be a good reason for not trying to get ME diagnosed properly. Maybe if the difference with ME was made clear the other illnesses under CFS would be easier to disentangle.

Assuming everyone who is told they have CFS has the same illness doesn't help anyone.

Mithriel

 

[Dolphin]

PEM - still there, but now increasingly difficult to differentiate from mere deconditioning

When I was mild, if I didn't do much I might not feel particularly bad.
But if I did something very athletically demanding e.g. some sort of competitive sport with a lot of movement (not simply self-paced running, cycling, swimming), it would feel different the next day e.g. I'd feel a bit down which was not something I felt pretty much any other time in my life.

I think if you push even mild people enough, you can differentiate. I think that's what the exercise studies show where they compare people to sedentary controls.

 

[flybro]

Case defintion has created such a mess, that the reason for not wanting ME and CFSrs not to be told DONT DONATE BLOOD,

was beacuse ' everyone that felt tired would suddenly stop donating blood.

Watch the CFSAC meeting from Monday its in their.

Bloody ridiculous.

I want Candadian Criterior Defintion, this is pathetic, I cant beleive they came out with it AT the CFSAC meeting.

Lenny Jason was amazing how he kept is cool is beyond me.

 

[Gerwyn]

I think a general problem with diagnosis is the fact that our symptoms shift over time. At a specific time if you look at my symptoms, I may well not qualify for ME if the definition is rigid. However over time I would. Doctors often focus on what's wrong with you NOW, and have difficulty with the long, complicated history. Therefore, distinguishing too much between ME and CFS is potentially dangerous.

Instead I think it should be seen as a SPECTRUM disorder, where people move up and down the scale, and have different subtypes, but in general need to be looked at as a single, complex group for some purposes, if not all. Does this make any sense?

People can go into remission but if not the core symptoms of the illness exist.there is no evidence of any subtypes.people either fullfill the CCC criterea or they do not.It is aneuroimmne endocrine disorder with a particular symptom spectrum.Drs generally dont understand it and typically deny what They can,t understand. Finally it is not a disorder of any kind.It is an illness.

 

[girlinthesnow]

As I understand it, it is an infectious disease that presents symptoms as a neuroimmune endocrine disorder.

The biomarkers and tests for these; neurological, immune and endocrinal now exist.

 

[awol]

again, you have to be tested at the right time, and doctors who know nothing are pathetic at seeing the whole history and the whole story. I KNOW my endocrine system has been completely off, but I have never had the luck of having a doctor actually test me for the right things when they have been hapenning, hence 7 years on, still no solid diagnosis.

I have in the past conformed to CCC. But because of earlier doctor incompetance current doctors are unlikely to find proof of this, and my current ones didn't know this definition existed until I showed it to them. If this is a retrovirus, I still have it (no test to check here yet) but doctors could easily throw me under ideopathic until the next time some infection or stressful event throws me off course.

THAT is the danger. People like me could easily be missed.

I do agree for research purposes it is important to have quite narrow and specific criteria, but clinical is different from research for a reason.

 

[awol]

Finally it is not a disorder of any kind.It is an illness.

Well I didn't mean to cause confusion. Autism is called a spectrum disorder because it presents in different ways for different patients. There is no black and white. It is a range. Disorder literally means something that is not working right and is in no way restricted to the psychological - though people here tend to think it means psychological.

Before anyone else jumps on me for interpreting my comments as a devaluation of your illness I would welcome you to read my introduction post. It in no way includes all of my past and present symptoms, but clearly shows that I am very sick. Think about that before devaluing MY experiences and concerns.

 

[awol]

tomk,

When I was mild, if I didn't do much I might not feel particularly bad.
But if I did something very athletically demanding e.g. some sort of competitive sport with a lot of movement (not simply self-paced running, cycling, swimming), it would feel different the next day e.g. I'd feel a bit down which was not something I felt pretty much any other time in my life.

I think if you push even mild people enough, you can differentiate. I think that's what the exercise studies show where they compare people to sedentary controls.

I hope you are right, because for me at least, PROOF of this thing has been ridiculously elusive.

 

[Mithriel]

awol said

Well I didn't mean to cause confusion. Autism is called a spectrum disorder because it presents in different ways for different patients. There is no black and white. It is a range. Disorder literally means something that is not working right and is in no way restricted to the psychological - though people here tend to think it means psychological.

Before anyone else jumps on me for interpreting my comments as a devaluation of your illness I would welcome you to read my introduction post. It in no way includes all of my past and present symptoms, but clearly shows that I am very sick. Think about that before devaluing MY experiences and concerns.

ME is a specific illness, like MS and like MS it can have fatigue as part of it, but it is not "chronic fatigue" in any way. It isn't there one day and not the next, if you have it you have it for life.

It is not a spectrum of disorders, that is a confusion brought in by the invention of CDC CFS and Oxford CFS which do not describe a specific disease. It may well be one disease within a category of neuroimmune disorders in the same way there is a category of autoimmune disorders but that is a different concept.

I do not see how any of this is devaluing your experience. Many people who have been given a diagnosis of CFS are very sick indeed, some have cancers even BSE. Many of them, even those diagnosed with Oxford CFS will actually have ME.

I would like there to be a way of picking out those with ME as people with that illness are the most likely to be made worse by the current treatment of GET. I would hope that everyone who has been told they have CFS will eventually be properly diagnosed, but they are not in so much danger at this moment.

I think anyone reading this forum should try to find out for themselves if they have ME or not. While they may not get any help from their doctor, there are no treatments anyway except to try to keep within individual energy limits to avoid PEM. As Tom says, these limits can be quite high and if you are lucky you will be able to lead a fairly normal life.

I hope that research will soon lead to a category of neuroimmune disorders being recognized by doctors. The psyches will keep CFS but the only people left in that will be the ones who are doing well on CBT and GET while the rest of us are rediagnosed. I hope that Lyme disease tests are soon developed and no one is told they have somatisation because a doctor can't be bothered running tests.

However it will still be important for those of us whose illness is made worse by exercise to know our personal limits even if it is not a priority for doctors.

Mithriel

 

[Bob]

Bob,

I've got to disagree with you on some things. As I see it there was ME in outbreaks at least since the 1930's. Then it exploded in the late 70s and early 80s and was given the inappropriate name "CFS" by CDC. The name ME was still used by WHO and in the UK and the vast majority of the rest of countries.

In 1991 Sharpe and co-conspirators in the UK came up with their Oxford "CFS" definition which is nothing more than what has always been called (and in the US is still called) Idiopathic Chronic Fatigue (Chronic Fatigue of unknown cause). This was a transparent attempt to create confusion and bad science so we could be oppressed.

Therefor we should abandon the term "CFS". The disease we discuss on PR, namely ME or US "CFS" should be called "ME" (or "ME/CFIDS"). The bogus Oxford definition has to be abandoned. These people have what has always been called Idiopathic Chronic Fatigue; this is what it needs to be called.

Hi Justin,

Thanks for taking the time to discuss this...
What you say makes a lot of sense...
You've explained it really well, so thanks for that.

I totally support using the Canadian, or similar, definitions...
I think it's our only way forwards...

I think my only concern lays with those who don't have the neuro-immune disease, ME, or idiopathic chronic fatigue, but fall somewhere in between with an unexplained chronic fatigue caused by a physical process... but maybe a CFS diagnosis would be appropriate for this category.

Maybe I have just been worrying too much about things like that, and the focus should be on sorting out the neuro-immune disease, ME, which is the condition that many of us concerned with.

Bob


Oh, just a couple of points to pick up on:

UK NICE "CFS" is not defined by Fukuda (which defines US "CFS"), it is defined as Oxford definition + PEM.

I'm not sure what you are explaining here... everyone in the UK is diagnosed with CFS/ME using a single criteria... so we are all lumped under one umbrella syndrome, whatever our disease/illness.

I don't know what you mean by this. You have to meet Fukuda to be diagnosed with CFS in the US. That is, ME = US "CFS". If you have Oxford UK "CFS" you get diagnosed with Idiopathic Chronic Fatigue or just the symptom Chronic Fatigue (as has always been done here and used to be done in the UK).

In many people's eyes Fukuda does not diagnose 'ME' but only ME/CFS... My opinion is that you need a stricter definition such as Canadian in order to properly distinguish a disease called 'ME'.
The point I was making is that people in the USA have said that no one gets an 'ME' diagnosis... that everyone gets a 'CFS' diagnosis... and that many people believe that the CDC definition isn't tight enough to distinguish ME from CFS.

 

[Jerry S]

I agree with Mithriel. The concept of a spectrum disorder is problematic because of the ambiguity created at the less severe end of the scale. This has been the problem with the CDC's CFS. The only required feature of the syndrome is 6 months of fatigue. There is no required defining feature to allow a differential diagnosis or selection of a coherent reproducible research cohort.

 

[Bob]

Hi awol,

I totally agree with you that a lot of doctors would be totally incapable and totally unwilling to diagnose ME if it was separated from CFS...
There would be an enormous struggle for many of us to get a diagnosis... and many of us would be thrown on the CFS scrapheap.
But... I don't think that you need to worry about it as much as you are, for a number of reasons:

1. At the moment we don't get treated for a neuro-immune disease anyway... we just get treated as having a psychological disorder, so it wouldn't make any difference.
2. Those of us who have experienced some remission, and are feeling relatively well, don't need as much looking after or as much medical treatment as those who would get an immediate ME diagnosis.
3. If stricter criteria were adopted then the neuro-immune disease, ME, would get recognition as a serious debilitating disease, which it doesn't get now.
4. If stricter criteria were adopted, this would filter down to all of us, in time, as the disease gained more and more recognition and understanding.
5. The stricter criteria would get rid of all of the confusion surrounding ME/CFS/idiopathic fatigue, and it would mean having a lot more insight into all the different illnesses which come under the present ME/CFS banner.
6. Stricter criteria would mean that research into ME would start to gain massive significance and it would bring significant results to us in terms of treatment and testing. Once a successful simple test was developed using the stricter criteria, then it would immediately become easy for us to get an ME diagnosis.

again, you have to be tested at the right time, and doctors who know nothing are pathetic at seeing the whole history and the whole story. I KNOW my endocrine system has been completely off, but I have never had the luck of having a doctor actually test me for the right things when they have been hapenning, hence 7 years on, still no solid diagnosis.

I have in the past conformed to CCC. But because of earlier doctor incompetance current doctors are unlikely to find proof of this, and my current ones didn't know this definition existed until I showed it to them. If this is a retrovirus, I still have it (no test to check here yet) but doctors could easily throw me under ideopathic until the next time some infection or stressful event throws me off course.

THAT is the danger. People like me could easily be missed.

I do agree for research purposes it is important to have quite narrow and specific criteria, but clinical is different from research for a reason.