Diagnostic Criteria - can we resolve our community's differences?

[Bob]

rlc, your posts have been very interesting to read, and the research you've spoken about is definitely worthy of us pushing for further investigation.

I admire Byron Hyde's work, and personally I'd be happy to push for the Nightingale criteria to be used for research purposes.

But what I'm trying to do with this thread is something specific, and it's not necessarily to discuss what the best description of ME is, although it is helpful to have that discussion as well.
The purpose of starting this thread, was to work out what consensus, if any, our whole community can agree on, going forwards, in terms of pushing for political change, in order to then improve the science.

rlc, I don't agree with everything you've said...
I don't agree with you when you say that PEM is not a useful criteria.
I think that PEM does tend to characterise physical diseases, rather than psychological illness, so it could be useful to include it in criteria in that respect, as at least this would be a step towards getting the disease out of the hands of the psychological school which has plagued us for so long. A step in the right direction.
Also, I believe that PEM related to ME might have a totally unique nature. PEM in most physical illnesses, occurs immediately that the exertion is performed and then diminishes with rest. But PEM in ME patients does not occur immediately, but has delayed onset, and can last for months or years after the exertion, and does not diminish with rest. The worsening of the malaise (i.e. the relapse) also brings with it a worsening range of weird and not so wonderful other symptoms, which tend to increase as the illness relapses.

I also don't agree with you view of how prevalent ME is...
All the people I know locally, have almost identical lives, and identical features to their illness.
So, although many people maybe misdiagnosed, I don't personally believe that it is a majority of us.
I happen to believe that ME/CFS is far more homogeneous than is often thought. But that's just a personal point of view.
I accept that exhaustion, malaise and cognitive problems might be common to many different illnesses, but the nature of the symptoms and lifestyles that i see in the ME patient community around me is remarkably similar, so I'm personally not so sure that ME, as diagnosed in our communities, is such a heterogeneous syndrome as many people believe.

Also, I have a friend who wouldn't qualify for a Nightingale diagnosis (as far as i understand the criteria) because he had slow onset ME/CFS, but his illness is remarkably similar to mine. So personally, I'm not so sure that the Nightingale criteria are infallible.

Dolphin's post explains my thinking about the SPECT scans... That they might pick out definite ME patients with specific types of symptoms, but they might miss a lot other genuine ME patients.
I can't see how you can be so certain that all ME patients would fail a SPECT scan, unless you believe that all ME patients are limited only to epidemic outbreaks of ME, where all the patients have failed the SPECT scans. This is a very limited view of ME, and one that i do not agree with.

Also, many of us on the forum are now being tested positive for XMRV, which is a common factor, and could explain, for example, chronic EBV infection (which you declare is a separate disease to ME).
So, i think your certainty that most of the people on this forum have CFS rather than ME, is not founded on hard evidence, but is only a theory.


What I'm trying to do on this thread, is to see if there is a consensus between patients about what we would all be happy to campaign for with a united voice.
I don't want to get in the way of individuals having their own strong ideas about what they want, and advocating strongly for their own preferred way forwards.
But I'm interested in what practical steps we could take, politically, with a united voice.

rlc, you insist that the only way forwards is to diagnose 'real' ME using the Nightingale criteria, but there are many problems disentangling what you describe as 'CFS' from 'ME'. These problems arise from a political establishment point of view, a practical point of view, and also from a patient point of view. I don't think it is the most likely first step that our community will be campaigning for with one voice. To push for the Nightingale criteria, would not be likely to gain momentum easily because hardly anyone has heard of them, whereas the Canadian consensus criteria already have a momentum behind them. They might not be perfect, but many people think they are a step in the right direction.
Using the SPECT scans may or may not be useful (i don't know enough about them), but they won't be so useful to our wider community unless they are used alongside a change in the political landscape.

Even if you are entirely correct with your view of what ME is, and how it should be diagnosed, if we are looking for something that we can all push for together, then we might need a less ambitious starting point, such as starting with the Canadian consensus criteria...

rlc, you say that SPECT scans and the Nightingale criteria would be your ideal. But if that wasn't an immediate option, for whatever reason, would there be any intermediary step, as an immediate way of improving the situation that we have now, that you would be happy for the whole community to campaign on in order to see improvements? Reaching a consensus here wouldn't need to change your opinions at all.

 

[Bob]

Here's the forum's useful thread on diagnostic criteria...
It's got all the different diagnostic criteria and guidelines listed, with links if you want further info...
http://forums.aboutmecfs.org/showthread.php?1075-ME-CFS-diagnostic-and-treatment-guidelines

 

[WillowJ]

bump... I really want to know if there's an answer to Bob's question... is there a compromise position that we could settle on, or a position that 95% of us could endorse?

Or perhaps, for those that would prefer to reserve the term ME for Ramsay with Positive SPECT only... could a case definition be proposed for other post/chronic viral disease? It's pretty clear that many of us, even if all of us do not have the exact same enterovirus-Ramsay-ME disease, do indeed have a similar clearly infectious disease. These are not misdiagnosed MS, MDD, simple low Vitamin D, thyroid disease alone, etc.

Again, my preference would be to keep us all together because we've all been through the wringer together, and I don't see a qualitative difference between enteroviral-associated and, for example, HHV-6-associated Disease. But it would be interesting to see what another case definition might look like.

What you cannot do, is just ignore the other population. That is unconscionable.

My second point is about SPECT scans, which were actually brought up earlier in the thread (edit: I meant to talk about that but called them PET scans instead /edit)... the problem with using SPECT for positive diagnosis is that some patients have positive SPECT some, but not all, of the time. They do not have positive SPECT once and then not again (as we might expect if it was from an acute infection that then cleared and did not constitute a further problem), but recurrently. Does that patient have ME, then recover, then get ME again? I think not.

 

[Dolphin]

My second point is about SPECT scans, which were actually brought up earlier in the thread (edit: I meant to talk about that but called them PET scans instead /edit)... the problem with using SPECT for positive diagnosis is that some patients have positive SPECT some, but not all, of the time. They do not have positive SPECT once and then not again (as we might expect if it was from an acute infection that then cleared and did not constitute a further problem), but recurrently. Does that patient have ME, then recover, then get ME again? I think not.

I think the issue of SPECT scans is important and probably needs to be sorted.

If people think it's a sure-fire test with 100% specificity and sensitivity, then holding strictly to it is reasonable. I haven't seen the evidence that that is the case (with SPECT scans).

As I said, what I saw in the Da Costa et al. study was an average difference which is not the same thing - there was no mention of particular thresholds having excellent specificity and sensitivity (or mention of any thresholds at all that I recall).

 

[SOC]

The fundamental problem we have is simply that we do not have a measurable, biomarker (or biomarkers) that have a clear yes/no lines, or as Dolphin said, "a sure-fire test with 100% specificity and sensitivity". Until we have that, the boundaries we draw amongst ourselves are arbitrary and probably unnecessarily divisive.

It is certainly possible that we have multiple similar (not identical) illnesses. It is also possible that there is a single root cause of our illnesses. We simply don't know for certain, yet.

Assuming, for the sake of argument, that we have multiple similar illness, I think it would be foolish to divide what little strength we have. As better biomarkers and treatments become available, some specific illnesses may be selected out, just as fibromyalgia is now considered a "legitimate" illness separate from ME/CFS because it has a marker a GP can use (tender points) and a treatment.

The selecting-out process is advantageous in that it rarely leaves behind a small and helpless/hopeless group; instead, it refines the larger somewhat heterogeneous group to a final, identifiable subset.

I think Bob is asking what it is that we all have in common -- that we can work together on -- so I am going to ask some questions for the purposes of discussion:

1) Do we agree that that we all have neurological and immune symptoms?
2) Do we agree that we all have endocrine symptoms?
3) Do we agree that PEM is a necessary feature of our common grouping of illnesses?
4) Do we agree that we need separate research and clinical definitions (other illnesses have them)?

IF we agree on all the above questions -- which I realize we may well not -- then I suggest that we consider ourselves patients with neuro-immune, or neuro-endocrine-immune illnesses. We might even give ourselves a common name, even if it's not used by the medical authorities, that allow us to work as a group. For example, we might call ourselves, as a group, patients with NEI diseases, or some such.

If we remain united as patients with idiopathic neuro-immune disease (INID?), we can work for better research and services for us all. Perhaps over time we will find that we are ME-NID, EBV-NID, Polio-NID, and so on. Maybe some will remain INID, but if we think of ourselves as an umbrella group, they won't get lost in the rush to dis-identify ourselves from the hated "CFS".

Whatever we do, we need to make a clear distinction in a research definition between people with neuro/endocrine/immune dysfunctions and those with primary psychiatric illnesses and no clear n/e/i symptoms. I believe the existence of PEM is the distinguishing characteristic, but I may be wrong. This is worth discussing.

To my way of thinking, CCC rewritten appropriately as a research definition would work for research, while CCC or Fukuda (properly applied) + PEM would work as a clinical definition until research comes up with something better.

Frankly, if those who claim "genuine" or "classical" ME want to take their ball and go home, fine with me. I think they would be doing themselves a disservice cutting themselves off from the bigger group, but so be it. Before they get too eager to run off, they might want to consider that Mikovitz, Lombardi, Singh, Alter, Lo, the Ruscettis, the Lights, and other American researchers are not researching the small, selective "real ME" group; they are researching the larger, inclusive group currently identified in the US as "CFS". Cutting themselves off from those researchers seems unwise to me, but maybe they have connections with researchers in the UK and Australia ready to dive in with a concentrated research effort on their select little group.

Yes, we should push to select out those patients who have known, but undiagnosed diseases by demanding more comprehensive testing for all of us. That selecting-out process results in selecting out those for whom there is a known treatment, rather than kicking into oblivion fellow patients for whom there is no diagnosis or treatment.

To be perfectly honest, I'm getting pretty sick of all the efforts to claim "real" ME or "real" CFIDS, or even "real" CFS. We've all heard the strategy "Divide and Conquer". It looks to me that those people are doing the enemies' work for them -- divide us into so many small groups that we have even less funding, less voice, and less impact than we do now.

 

[In Vitro Infidelium]

The fundamental problem we have is simply that we do not have a measurable, biomarker (or biomarkers) that have a clear yes/no lines, or as Dolphin said, "a sure-fire test with 100% specificity and sensitivity". Until we have that, the boundaries we draw amongst ourselves are arbitrary and probably unnecessarily divisive.

It is certainly possible that we have multiple similar (not identical) illnesses. It is also possible that there is a single root cause of our illnesses. We simply don't know for certain, yet.

Assuming, for the sake of argument, that we have multiple similar illness, I think it would be foolish to divide what little strength we have. As better biomarkers and treatments become available, some specific illnesses may be selected out, just as fibromyalgia is now considered a "legitimate" illness separate from ME/CFS because it has a marker a GP can use (tender points) and a treatment.

The selecting-out process is advantageous in that it rarely leaves behind a small and helpless/hopeless group; instead, it refines the larger somewhat heterogeneous group to a final, identifiable subset.

I think Bob is asking what it is that we all have in common -- that we can work together on -- so I am going to ask some questions for the purposes of discussion:

1) Do we agree that that we all have neurological and immune symptoms?
2) Do we agree that we all have endocrine symptoms?
3) Do we agree that PEM is a necessary feature of our common grouping of illnesses?
4) Do we agree that we need separate research and clinical definitions (other illnesses have them)?

IF we agree on all the above questions -- which I realize we may well not -- then I suggest that we consider ourselves patients with neuro-immune, or neuro-endocrine-immune illnesses. We might even give ourselves a common name, even if it's not used by the medical authorities, that allow us to work as a group. For example, we might call ourselves, as a group, patients with NEI diseases, or some such.

If we remain united as patients with idiopathic neuro-immune disease (INID?), we can work for better research and services for us all. Perhaps over time we will find that we are ME-NID, EBV-NID, Polio-NID, and so on. Maybe some will remain INID, but if we think of ourselves as an umbrella group, they won't get lost in the rush to dis-identify ourselves from the hated "CFS".

Whatever we do, we need to make a clear distinction in a research definition between people with neuro/endocrine/immune dysfunctions and those with primary psychiatric illnesses and no clear n/e/i symptoms. I believe the existence of PEM is the distinguishing characteristic, but I may be wrong. This is worth discussing.

To my way of thinking, CCC rewritten appropriately as a research definition would work for research, while CCC or Fukuda (properly applied) + PEM would work as a clinical definition until research comes up with something better.

Frankly, if those who claim "genuine" or "classical" ME want to take their ball and go home, fine with me. I think they would be doing themselves a disservice cutting themselves off from the bigger group, but so be it. Before they get too eager to run off, they might want to consider that Mikovitz, Lombardi, Singh, Alter, Lo, the Ruscettis, the Lights, and other American researchers are not researching the small, selective "real ME" group; they are researching the larger, inclusive group currently identified in the US as "CFS". Cutting themselves off from those researchers seems unwise to me, but maybe they have connections with researchers in the UK and Australia ready to dive in with a concentrated research effort on their select little group.

Yes, we should push to select out those patients who have known, but undiagnosed diseases by demanding more comprehensive testing for all of us. That selecting-out process results in selecting out those for whom there is a known treatment, rather than kicking into oblivion fellow patients for whom there is no diagnosis or treatment.

To be perfectly honest, I'm getting pretty sick of all the efforts to claim "real" ME or "real" CFIDS, or even "real" CFS. We've all heard the strategy "Divide and Conquer". It looks to me that those people are doing the enemies' work for them -- divide us into so many small groups that we have even less funding, less voice, and less impact than we do now.

This seems eminently sound and the concept of 'umbrella group' is something that may satisfy some the need to fit self description to disease description - however there is one glaring problem and that is "neuro-immune disease". There is no clinical description anywhere of such a thing as neuro-immune disease and the term seems exclusive to the WPI who apply it to a whole pick and mix of unrelated conditions in the style of the worst psuedo science quackery. If 'true M.E' folks can't get along with 'mere CFS' sufferers, does anyone really believe that mixing M.E/CFS/M.E into a stew with ASD, MS, GWS etc, will actually serve to make advocacy effective or gain clinical or research credibility ?

IVI

 

[insearchof]

Hi SOC

Frankly, if those who claim "genuine" or "classical" ME want to take their ball and go home, fine with me. I think they would be doing themselves a disservice cutting themselves off from the bigger group, but so be it. Before they get too eager to run off, they might want to consider that Mikovitz, Lombardi, Singh, Alter, Lo, the Ruscettis, the Lights, and other American researchers are not researching the small, selective "real ME" group; they are researching the larger, inclusive group currently identified in the US as "CFS". Cutting themselves off from those researchers seems unwise to me, but maybe they have connections with researchers in the UK and Australia ready to dive in with a concentrated research effort on their select little group.

1. Although there has been some research on general enteroviral infections, there has been NO authentic ME research for years, that I am aware of.

2. Mikovitz et al, did not study what I believe you refer to as the ''selective'' or ''real ME '' group that is true.

What Mikovitz et al did, I believe, was study CFS patients and not from the large group you suggest, but from the ''sickest of the sick'' of the CCC CFS groups (15 percentile group I think they were referred to as). If this is correct, XMRV+ CFS patients might not turn out to be the large group you might be expecting.

Further as far as I know, no one has expressed any interest in looking at ME patients for any scientific research. If WPI wishes to do so, I am sure the ME community would very much welcome it....and they would be wise to consult the Nightingale Foundation in Canada for a suitable research co hort and quickly, as Byron Hyde is not getting any younger.

To be perfectly honest, I'm getting pretty sick of all the efforts to claim "real" ME or "real" CFIDS, or even "real" CFS. We've all heard the strategy "Divide and Conquer". It looks to me that those people are doing the enemies' work for them -- divide us into so many small groups that we have even less funding, less voice, and less impact than we do now

.


SOC on the other thread, you were using terminology such as ''us'' and ''them'' which I pointed out was pretty divisive/not very helpful and I come across to this thread to respond on Dolphin's point on spect scans, because you took me to task on the other thread for failing to do so and now I find this comment.

I have to say SOC, that in so far as ''divide and conquer'' strategies go, statements like these, do a good job of that - all on their own.


Before you go about inflamming matters by suggesting those interested in advancing the interests of ME are doing the ''enemies'' work, (who ever that is) to dismantle and or disenfranchise PWCFs - how do you think ME patients and ME advocates have felt for the past 25 years - a small group that has never had ANY government funding, NO voice at ANY table and NO impact. And here you are ''yelling fire in a crowded room, so to speak'' as they come forward to ask for what is just and fair. I think I'll come back later - or maybe not.

 

[Bob]

This seems eminently sound and the concept of 'umbrella group' is something that may satisfy some the need to fit self description to disease description - however there is one glaring problem and that is "neuro-immune disease". There is no clinical description anywhere of such a thing as neuro-immune disease and the term seems exclusive to the WPI who apply it to a whole pick and mix of unrelated conditions in the style of the worst psuedo science quackery. If 'true M.E' folks can't get along with 'mere CFS' sufferers, does anyone really believe that mixing M.E/CFS/M.E into a stew with ASD, MS, GWS etc, will actually serve to make advocacy effective or gain clinical or research credibility ?

IVI

So ASD, MS, GWS and ME are not neuroimmune diseases? What are they then?
I don't really consider it quackery to define those diseases as neuroimmune diseases.
And I also don't consider it quackery for the WPI to investigate a range of different neuroimmune diseases, if that's what they want to do. It's not as if they lump the diseases together for clinical purposes.
I don't think that your opinions on those subjects are helpful for the discussion we are having on this thread.

 

[Dolphin]

This seems eminently sound and the concept of 'umbrella group' is something that may satisfy some the need to fit self description to disease description - however there is one glaring problem and that is "neuro-immune disease". There is no clinical description anywhere of such a thing as neuro-immune disease and the term seems exclusive to the WPI who apply it to a whole pick and mix of unrelated conditions in the style of the worst psuedo science quackery. If 'true M.E' folks can't get along with 'mere CFS' sufferers, does anyone really believe that mixing M.E/CFS/M.E into a stew with ASD, MS, GWS etc, will actually serve to make advocacy effective or gain clinical or research credibility ?

IVI

I have only been dipping in and out of this discussion. I think resources are tight enough in our area and so would not be in a rush that money I donated would be used to study ASD and MS (I'm unsure about GWS as some have a CFS-type condition). Saying that, there may be occasions when looking for common infections, etc. may be useful.

 

[Bob]

To be perfectly honest, I'm getting pretty sick of all the efforts to claim "real" ME or "real" CFIDS, or even "real" CFS. We've all heard the strategy "Divide and Conquer". It looks to me that those people are doing the enemies' work for them -- divide us into so many small groups that we have even less funding, less voice, and less impact than we do now.

Before you go about inflamming matters by suggesting those interested in advancing the interests of ME are doing the ''enemies'' work, (who ever that is) to dismantle and or disenfranchise PWCFs - how do you think ME patients and ME advocates have felt for the past 25 years - a small group that has never had ANY government funding, NO voice at ANY table and NO impact. And here you are ''yelling fire in a crowded room, so to speak'' as they come forward to ask for what is just and fair. I think I'll come back later - or maybe not.

Hi sickofcfs and insearchof,
From what you've both posted on this thread, I don't have any clarity about what your differences are.
(And to be honest, your user names are quite similar, so I'm afraid it's easy to get you both mixed up! )
(I don't mean to be flippant here... the point I'm making is that I think your differences are probably surface deep.)

And even on the other thread that you were both posting on, the differences between you seemed to be undefined, and I can't define what they were.
So I really can't understand why the small differences between you has been emphasised, rather working together towards a common goal.
This thread was set up precisely to work through the differences that insearchof has emphasised; preferably in a constructive way, and in a safe environment. Differences such as whether members of our community feel like other people are trying to create a "them and us" scenario... Whether there should be a more exclusive definition for ME... Whether any new criteria should be used for clinical purposes, or research purposes... Whether ME is a distinct disease, define by a particular criteria, or whether we should seek to have ME defined by a looser criteria, for practical purposes... What evidence we should be looking at to base our opinions on etc etc etc.
That's what I'd love us all to work together to find out, without taking anything personally.
Everyone's got their own personal opinions about all of these subjects, so of course we are not going to agree on everything while we work through our differences.
Bob

 

[Bob]

The fundamental problem we have is simply that we do not have a measurable, biomarker (or biomarkers) that have a clear yes/no lines, or as Dolphin said, "a sure-fire test with 100% specificity and sensitivity". Until we have that, the boundaries we draw amongst ourselves are arbitrary and probably unnecessarily divisive.

It is certainly possible that we have multiple similar (not identical) illnesses. It is also possible that there is a single root cause of our illnesses. We simply don't know for certain, yet.

Assuming, for the sake of argument, that we have multiple similar illness, I think it would be foolish to divide what little strength we have. As better biomarkers and treatments become available, some specific illnesses may be selected out, just as fibromyalgia is now considered a "legitimate" illness separate from ME/CFS because it has a marker a GP can use (tender points) and a treatment.

The selecting-out process is advantageous in that it rarely leaves behind a small and helpless/hopeless group; instead, it refines the larger somewhat heterogeneous group to a final, identifiable subset.

Thanks sickofcfs,
This is all helpful.

Yes, nothing is certain with ME, but I do think that most people with ME would agree that post exertional malaise is a defining feature of the illness. Of course this, in itself, doesn't make it a homogeneous disease, but then nor does using the CCC, for example.

But narrowing down the features of ME, for example by insisting that post exertional malaise is included in the definition, might at least help the field of research, and bring more credibility to the illness, in the eyes of the ignorant, especially if there's also a name change.

I think Bob is asking what it is that we all have in common -- that we can work together on -- so I am going to ask some questions for the purposes of discussion:

1) Do we agree that that we all have neurological and immune symptoms?
2) Do we agree that we all have endocrine symptoms?
3) Do we agree that PEM is a necessary feature of our common grouping of illnesses?
4) Do we agree that we need separate research and clinical definitions (other illnesses have them)?

I like your questions, but I think they might be problematic for everyone in the patient community to answer.
For example, how do we know if we have neurological and immune symptoms or endocrine symptoms?
I feel lousy all the time but can I personally define feeling lousy as being due to neurological, and immune, and endocrine symptoms?
Yes, I have cognitive symptoms, and I assume that I have an immune system problem, and I probably have endocrine symptoms, but how do I know for certain unless I have a doctor who can tell me?

Would I define ME as having these symptoms? Yes, I would personally, so I'd personally be happy for ME to be defined as having neurological, and immune, and endocrine symptoms.

IF we agree on all the above questions -- which I realize we may well not -- then I suggest that we consider ourselves patients with neuro-immune, or neuro-endocrine-immune illnesses. We might even give ourselves a common name, even if it's not used by the medical authorities, that allow us to work as a group. For example, we might call ourselves, as a group, patients with NEI diseases, or some such.

If we remain united as patients with idiopathic neuro-immune disease (INID?), we can work for better research and services for us all. Perhaps over time we will find that we are ME-NID, EBV-NID, Polio-NID, and so on. Maybe some will remain INID, but if we think of ourselves as an umbrella group, they won't get lost in the rush to dis-identify ourselves from the hated "CFS".

I really like these suggestions, including having an umbrella term, which would keep us united. I like your term 'idiopathic neuro-immune disease' which could possibly help our community.
It's strange that 'idiopathic' actually means 'of an unknown origin', so in fact, I think that all ME should probably be called 'idiopathic', but it seems to have become almost a term of abuse within our community, which is only used to define a psychiatric illness, which makes it a contradiction. In fact CFS with psychiatric causes should actually be called CFS, whereas neurological ME should actually be called idiopathic ME, as it has unknown origins. (I'm not suggesting that this should be the case, I'm just pointing out the irregularities of the names!)

The problem I see with your suggestions here, is that these suggestions are novel ideas, and they'd involve a heck of a lot of work in order to make them widely known.
I think that it is probably better to stick to the well known, and I think quite popular, name 'ME', at least to start with.

Whatever we do, we need to make a clear distinction in a research definition between people with neuro/endocrine/immune dysfunctions and those with primary psychiatric illnesses and no clear n/e/i symptoms. I believe the existence of PEM is the distinguishing characteristic, but I may be wrong. This is worth discussing.

Yes, this is something that I would wholeheartedly want to promote, without any doubt at all. From the rest of this thread, it seems that this is something that everyone can agree on.

To my way of thinking, CCC rewritten appropriately as a research definition would work for research, while CCC or Fukuda (properly applied) + PEM would work as a clinical definition until research comes up with something better.

Leonard Jason is reportedly working on creating a workable definition of CCC, so maybe this is something our entire community can get behind, in terms of promoting for use in research.

Frankly, if those who claim "genuine" or "classical" ME want to take their ball and go home, fine with me. I think they would be doing themselves a disservice cutting themselves off from the bigger group, but so be it. Before they get too eager to run off, they might want to consider that Mikovitz, Lombardi, Singh, Alter, Lo, the Ruscettis, the Lights, and other American researchers are not researching the small, selective "real ME" group; they are researching the larger, inclusive group currently identified in the US as "CFS". Cutting themselves off from those researchers seems unwise to me, but maybe they have connections with researchers in the UK and Australia ready to dive in with a concentrated research effort on their select little group.

Yes, we should push to select out those patients who have known, but undiagnosed diseases by demanding more comprehensive testing for all of us. That selecting-out process results in selecting out those for whom there is a known treatment, rather than kicking into oblivion fellow patients for whom there is no diagnosis or treatment.

To be perfectly honest, I'm getting pretty sick of all the efforts to claim "real" ME or "real" CFIDS, or even "real" CFS. We've all heard the strategy "Divide and Conquer". It looks to me that those people are doing the enemies' work for them -- divide us into so many small groups that we have even less funding, less voice, and less impact than we do now.

I also don't find it helpful when patients accuse other patients of not having 'real' ME.
But, if we are proposing to use more exclusive diagnostic criteria, then we could easily unintentionally be creating a 'them and us' scenario.
So that's what this thread is all about... How do we improve the definitions of ME without leaving people behind.

We need as many people to input into this as possible.

 

[Angela Kennedy]

One key discrepancy over the years has been the studied ignorance by many of the biomedical evidence of Myalgic Encephalomyelitis and of 'CFS' where clinical and laboratory abnormalities have been found. This has led to many arguments from ignorance in dismissing the these key physiological abnormalities that have been present, and has allowed the situation we find ourselves in today, where neurological and other physiological dysfunction is treated like a chimera or phantom, and people with fatigue make up the research cohorts that promote psychogenic explanations of both constructs of 'ME' and 'CFS', while those with actual signs of dysfunction consistent with organic aetiologies are excluded from that research.

Out of everyone who posts here, each of us can only know ourselves whether we (or loved ones) have specific symptoms and signs of neurological and other physiological dysfunction, or whether we/they have 'only' weariness, depression, or whatever (I use that 'whatever' deliberately), and EVEN THEN only if/when we have access to accurate information.

If someone thinks they have depression or stress-induced 'fatigue', or just weariness, or lassitude, or hypochondria, then it is inevitable that they will find themselves in opposition to those of us on this forum either suffering, or with loved ones suffering, from frightening physical signs and symptoms that demonstrate severe physical impairment (leading to disability)- completely different to the kind of psycho/social disability measured say, in the cohorts used in Erlwein et al's negative XMRV study, although even (any) physical disablement also can cause some degree of psycho/social 'disability'.

The elephant in the room is psychogenic explanation of somatic illness, unfortunately, and, crucially, the 'psychogenic dismissal' of serious, sometimes life threatening disease and the adverse effects of that on people (up to and including premature death, but also devastated health, ruined opportunities in all areas of lives, various critical social and material inequalities), when these are based on default misdiagnosis of illnesses of uncertain aetiology.

Sick of CFS in particular - I suppose the question is - how do you see yourself in this scenario? I'm not asking you to disclose by the way - but to consider. What do you know of the construct of 'ME' for example? Do you believe, from the evidence available (and I'm assuming you have rational understanding of what symptoms/signs you have and make inferences about your illness from that evidence) that you have a chronic fatigue, CC ME/CFS, mental health issues causing your illness, or 'whatever'?

The reason I ask people to consider this issue is because people cannot be 'united' unless we know what we are united in. The history of ME and related illness outbreaks, and how 'CFS' came into being, is full of discrepancies which need unpicking (deconstructing, if you like), and that is hard when we are bombarded with misinformation from so many directions while having the facts denied us.

 

[Bob]

One key discrepancy over the years has been the studied ignorance by many of the biomedical evidence of Myalgic Encephalomyelitis and of 'CFS' where clinical and laboratory abnormalities have been found. This has led to many arguments from ignorance in dismissing the these key physiological abnormalities that have been present, and has allowed the situation we find ourselves in today, where neurological and other physiological dysfunction is treated like a chimera or phantom, and people with fatigue make up the research cohorts that promote psychogenic explanations of both constructs of 'ME' and 'CFS', while those with actual signs of dysfunction consistent with organic aetiologies are excluded from that research.

Out of everyone who posts here, each of us can only know ourselves whether we (or loved ones) have specific symptoms and signs of neurological and other physiological dysfunction, or whether we/they have 'only' weariness, depression, or whatever (I use that 'whatever' deliberately), and EVEN THEN only if/when we have access to accurate information.

If someone thinks they have depression or stress-induced 'fatigue', or just weariness, or lassitude, or hypochondria, then it is inevitable that they will find themselves in opposition to those of us on this forum either suffering, or with loved ones suffering, from frightening physical signs and symptoms that demonstrate severe physical impairment (leading to disability)- completely different to the kind of psycho/social disability measured say, in the cohorts used in Erlwein et al's negative XMRV study, although even (any) physical disablement also can cause some degree of psycho/social 'disability'.

The elephant in the room is psychogenic explanation of somatic illness, unfortunately, and, crucially, the 'psychogenic dismissal' of serious, sometimes life threatening disease and the adverse effects of that on people (up to and including premature death, but also devastated health, ruined opportunities in all areas of lives, various critical social and material inequalities), when these are based on default misdiagnosis of illnesses of uncertain aetiology.

Sick of CFS in particular - I suppose the question is - how do you see yourself in this scenario? I'm not asking you to disclose by the way - but to consider. What do you know of the construct of 'ME' for example? Do you believe, from the evidence available (and I'm assuming you have rational understanding of what symptoms/signs you have and make inferences about your illness from that evidence) that you have a chronic fatigue, CC ME/CFS, mental health issues causing your illness, or 'whatever'?

The reason I ask people to consider this issue is because people cannot be 'united' unless we know what we are united in. The history of ME and related illness outbreaks, and how 'CFS' came into being, is full of discrepancies which need unpicking (deconstructing, if you like), and that is hard when we are bombarded with misinformation from so many directions while having the facts denied us.

Hi Angela,

This issue isn't supposed to be the elephant in the room in this thread...
I'd like these issues stated clearly, like you have done so, so we can discuss the whole subject fully, in a supportive and constructive environment.

But personally, I think that the practical issue of separating idiopathic CFS from all cases of neurological ME is not as clear cut as you have indicated, for the following reasons...

I don't know if it is always very easy, in practical terms, to distinguish between mild ME (neurological), and other CFS of an uncertain or psychiatric origin.

Many people consider that they have mild to moderate ME, and that's where the difficulties come in, because some people consider that if you have mild ME, then you don't have ME at all. I think that this might be one of the biggest causes of disharmony in our community.

I believe that we should take the people with mild ME with us, if we propose any changes to the diagnostic criteria to be used clinically or for research. And it seems, from this thread, that this is not such a difficult thing to do, but that we can easily agree on certain changes.

I think that it can sometimes be too easy to get caught up in our differences, when we only have slightly different experiences from each other.

Here's another example of the difficulties of separating CFS from ME: Idiopathic fatigue is considered a psychiatric problem, and not a neurological disease. But a problem that I see with this is that depression can cause severe fatigue, and depression can be 'organic' in origin, rather than psychological in origin. For example, bi-polar depression is widely considered to be 'organic', so doesn't this make it a neuroimmune disease, or very similar? I believe that other forms of depression can have an organic origin as well.
So my point here is that to try to clearly separate ME as a neurological disease from CFS as a psychiatric disease might not always be straightforwards in a practical sense, although I do agree that ME can, and should, be clearly defined as a separate entity.

I'm not trying to be difficult here, by raising these complications... I'm just pointing out that this is a very complex and sensitive area that needs to be sensitively explored.

Personally, I've suffered from depression in my life, and now I've got ME, so I can compare the two, and have no problem distinguishing the two (usually, although it can be confusing at times as they both affect my brain.)
When I used to suffer from what I called 'depression', I was certain (and still am) that it was of biological cause, with an environmental impact on top.

But if I had not experienced severe depression before, and then if went down with mild ME, then would I definitely know the difference?

From first hand experience, and from the experiences of my local ME community who all have fluctuating symptoms, I know that there are different levels of severity of ME. .

I just wanted to point these things out. But having said all of this, we do, on this thread, seem to be in agreement about what minimum changes our community could propose in order to make our lives better.

Insisting on the inclusion of 'post exertional malaise' as a symptom seems to be acceptable to everyone so far, even for clinical use.
And the CCC seem to be acceptable to everyone as a tool to be used for research.

So there seems to be some significant agreement between us all.

 

[Wayne]

I'm trying to make a post but it cuts off most of it. I'll try later.

Wayne

 

[Bob]

I'm trying to make a post but it cuts off most of it. I'll try later.

Wayne

Have you tried editing a previous post, and pasting your text into it? That usually works for me.

 

[dannybex]

I hate to be the cynic here Bob, but after reading a few of these pages, I hate to say it, but I think the answer to your original question is..."no".

 

[Wayne]

I know that there are different levels of severity of ME, from first hand experience, and from the experiences of my local ME community who all have fluctuating symptoms......

Insisting on the inclusion of 'post exertional malaise' as a symptom seems to be acceptable to everyone so far, even for clinical use.

Hi All,

Bob, thanks for the link on the other thread to this one. I did peruse the most recent posts here, and am finding my cognitive abilities stretched considerably for the effort. On the topic of cognitive abilities, it seems some of us have fairly major cognitive dysfunction, others have much less, and some have very little, if any at all (which impresses me considerably!) .

Perhaps I have it severely because I have tested positive for Lyme Disease. According to SOC's very interesting suggestions, perhaps I could be labeled Lyme-NID. But it also seems possible it could be because I developed it many years after my initial slow onset. If developing cognitive dysfunction is a natural progression, then others may become more and more affected as time goes by. So while I consider significant cognitive dysfunction a major defining criteria for ME/CFS and for myself, I can see where others would not have the same perspective, at least not at this time.

Regarding other markers besides the PEM (a terminology I actually very much dislike because I feel it trivializes the actual symptoms). PEM seems to be a symptom/feature that many here seem to be in agreement on. My experience suggests to me that OI, or POTS, or dysautonomia is also a defining feature, but it may not be for others. For me, a lot of what may or may not be defining features probably depends on what stage of ME/CFS a person is at. This belief stems from my observations that whatever we’re dealing with, it is a progressively worsening disease that manifests with progressively debilitating symptoms. I sometimes wonder how closely a person with recent onset ME/CFS physiologically resembles a person with chronic decades-long progression of ME/CFS.

I also sometimes think about the different “activity levels” that are posted on people’s bios. And I wonder if somebody with an activity level of say 5 or above, can really relate to somebody who has an activity level of say 1-2, or even less. Can they really have the same disease? Can they ever truly relate to having the same disease? Some continue to work, others can’t even get out of bed. Their everyday lives are worlds apart, and yet they both come to this board seeking answers to their similar yet very different challenging situations. So it’s the similarities rather than the differences that bring us together on this board.

One thing I’ve long realized is there really are no limits to how far things can deteriorate for myself, and probably for most of us, no matter what actual disease we may have. Because of this, I use my limited cognitive abilities to try to find different things that help me function a little better on a daily basis, as opposed to trying to decipher different scientific concepts, which is generally way too challenging for me. Regarding this discussion however, which does involve deciphering science, I would have to say that whatever similarities can bring us together is for the better. If we can do that, then it would seem the very important distinctions between the various diseases we have will eventually be clarified to all our benefit.

Final comments that may be a bit off-topic: I’ve spent a quite a bit of time thinking about the major cognitive dysfunction and brain issues I deal with. When I compare mine to others on this board, I sometimes get the impression that different areas of the brain are affected in different individuals (which would leave different individuals with different symptoms). Another thing I’ve noticed is that some areas of my brain work better than others. When I went through various testing when applying for disability benefits, I was told they had never seen such a disparity of readings that are a result of functioning in different areas of the brain. They said some of the results suggested a near-genius level of competence, and others showed very average (I think they may have been being kind by not mentioning they might have actually been below average).

In this regard, I am often amazed at how relatively easy some things are for me, and how extremely difficult other things are for me. I wonder if it’s a similar dynamic to a person losing a physical limb, and then having the opposing limb become much stronger as a result. Hard saying, but I wonder about a lot of things like this. Luckily, my brain issues don’t prevent me from wondering.

Anyway, thanks Bob, and everyone else for your contributions on this thread. I’ll mostly likely keep an eye on it, but probably won’t post too much further as many of these concepts are not easy for me to follow. I’m always trying to realize where my strengths are, and use my limited energy to fortify them as best I can. BTW, my apologies to anybody who found this post to be a bit off topic or a little too far ranging. That’s just sort of my nature.

Best to All, Wayne

 

[Bob]

I hate to be the cynic here Bob, but after reading a few of these pages, I hate to say it, but I think the answer to your original question is..."no".

All cynics are welcome Danny!

I was not deluding myself that this would be an easy task! But actually, there seems to be a surprising amount of agreement... so far.

I think that everyone has agreed that post exertional malaise should be included as a minimum requirement for a clinical definition.

And I think that everyone has agreed that the CCC should be available as a research tool.

You never know, it might just be the case that we might be able to agree on some minimum changes that we would all be happy to push for.

 

[dannybex]

Thanks Bob.

I guess it would be helpful, if someone could post in a concise manner, what are the key differences between ME and the CCC definition.

It seems to me that the main one is that ME has an acute onset, and CCC ME/CFS does not require that.

Also ME requires that one have plaque show up on an MRI or some severe abnormality on a SPECT scan (although SOS questioned that).

Other than those two things...what's the fuss about?

I agree with many on this board that CFS, although an extreeeeeemely unfortunate name, is not, a wastebasket diagnosis. That to me is insulting. It's a diagnosis of exclusion.

All cynics are welcome Danny!

I was not deluding myself that this would be an easy task! But actually, there seems to be a surprising amount of agreement... so far.

I think that everyone has agreed that post exertional malaise should be included as a minimum requirement for a clinical definition.

And I think that everyone has agreed that the CCC should be available as a research tool.

You never know, it might just be the case that we might be able to agree on some minimum changes that we would all be happy to push for.

 

[WillowJ]

it is, unfortunately, too often *used* as a wastebasket diagnosis, however. Many doctors will just toss up CFS (and not attempt, or do only a very incomplete set of, exclusions) because they do not have the time, the patience or, frankly, sometimes have a lack of caring, to decipher the patient's actual problem. Many people carrying a label of CFS do not actually meet the criteria for CFS. Same with the labels IBS and fibromyalgia. This does not mean any of these conditions are somehow not real. It does mean that they are, too often, not seriously diagnosed.

The other things is that ME/CFS could be a heterogenous condition (see Kerr's genomic subtypes, for instance) and one could argue "wastebasket" from that... but if so, then you'd have to argue the same for Lupus, hemophilia, diabetes, and so forth. At this point, I think the best thing to do, if this heterogenity (from Kerr-type studies) carries out and is replicatable... to keep us all (not all persistent fatigue, of course, but all neuro-immune with PEM) together and have subdivisions (just like hemophilia, diabetes, iron storage diseases, and so on).

Using Fukuda-with-PEM (and I agree that the term PEM is wussy and inaccurate) we are able to find unifying biological abnormalities which differentiate us from other disease conditions. NK cells (must be a specific pattern if Klimas is talking diagnostic biomarkers), inability to restore cellular energy, ion channel dysfunction, heat shock protein deficiency, and so on. We also find grounds for subdivisions. Low blood volume, abnormal cardiac wall motion, type of coinfections, MRI lesions, etc.

as far as using idiopathic, that may be technically correct as far as ultimate etiology is concerned, but as far as physician (and public) perception goes, I agree that this is not helpful from a strategy standpoint. Even though INID is cute.
Although part of our problem is that "chronic fatigue" doesn't differentiate us from anyone else, even from a lot of fairly healthy people, the other--and really the major, in the eyes of doctors--part of our problem is that no health authority has accepted any of the pathologies that have been demonstrated in the research. If we had CDC-sanctioned pathology, "CFS" would not be that big of a problem to doctors. Reinforcing "unknown cause" (regardless of whether we're talking about intermediate pathology or ultimate causation where the one is partly false and the other is, so far, probably mostly true) is only going to make things worse.