Is it worth explaining the difference between ME and CFS to the public??

[Guido den Broeder]

They are not the same condition.

ME is not the same as PVFS and I agree with Ramsay's and so too, on my reading, does the WHO who gives both a classification in the tabular body of the ICD 10 at G93

In the ICD-10, PVFS is not a condition but denotes a group of conditions, one of them (the only one currently listed, but that can change) being ME. This is perfectly in accordance with Ramsay.

Regards,

Guido

 

[insearchof]

Hi Guido

PVFS is a taxonomic classification for the purposes of the ICDs like ME and I agree with you that it covers a group of conditions.

The rest of your assertion I respectfully disagree with and if you care to read my previous posts you will understand why I have that pov.

 

[insearchof]

Hi Bob,

Just wanted to say thank you for setting up the wiki area and working on that. Its looking good and a thank you to rlc for the articles/links.

I hope to provide a few myself, when I can get a moment to sit down and sort out working links/what has not already been provided.

 

[Bob]

Hi Bob,

Just wanted to say thank you for setting up the wiki area and working on that. Its looking good and a thank you to rlc for the articles/links.

I hope to provide a few myself, when I can get a moment to sit down and sort out working links/what has not already been provided.

Thanku

And thanks for your recent posts, insearchof... I've read them all.

 

[Mark]

Apology to rlc

Thanks ISO for setting this out clearly...

Hi Mark

I did not have any trouble understanding or following the argument rlc was making.

I appreciate however the points you made and were raising, the need for clarity and of course, your personal right to do so.

I guess you already knew/understood the point rlc was making, but I really didn't and felt there needed to be clear evidence presented. I still don't think there has been, and I still don't think the claim of 'lying' was fair or reasonable. I still think the arguments I responded to were illogical.

But I regret having expressed that in such a strong and even a rude way.

All the same, your an intelligent and articulate fellow and charming (when it suites ) . I don't think it is hard to understand that most people would get their backs up when told their assertions are ''nonsense'' and their thoughts ''lazy'' (especially when they are ill and putting in a lot of effort).

Quite right, and I'm sorry I didn't spend more time on that wording. The "lazy" reference I particularly regret.

I think there is a difference also in the use of the term ''nonsense'' which you used more than once (a noun meaning: garbage, baloney, drivel, gobbledygook, gibberish, babble, rubbish, twaddle, claptrap, balderdash, hot air) and the term ''nonsensical'' (an adjective meaning:senseless, unreasonable, illogical). I take it, from what you have subsequently said - that perhaps nonsensical would have been a better choice, though I am not sure that you needed those terms at all to make your points. You were doing well without them.

A most excellent analysis!

"Nonsensical" was indeed the word I was looking for, rather than "nonsense" - that's exactly the distinction and I'm really sorry for getting the tone wrong.

And you're also right that all of those words were in any case superfluous, they weren't necessary to making the points I was making.

My apologies for being rude, rlc. I stand by my argument, but I was wrong to express it in the way I did. Sorry.

 

[Mark]

ISO: I looked up the CDC reference you gave and it perhaps gives some insight into why we see the definition issues from different perspectives:

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

For myself, I don't claim to have the kind of severe neurologic and muscular signs that are associated with ME. In fact, before joining PR, I would have said that I came nowhere near the CCC because I don't have some of the more severe symptoms. However, I've had many discussions here where I've realised that symptoms I previously hadn't understood do in fact fall under those categories.

For example, I never knew what "orthostatic intolerance" was before I joined PR. So I assumed I didn't have it. But I haven't been able to stand still, upright, for many years, without feeling weak, trembling, nauseous, itching, uncomfortable. I can walk around at a slow pace fine, but if I'm stood upright I feel awful. Though this is probably not as severe as for many people.

I also didn't recognise that I had any neurological signs. But again, on reading about them here, I recognised that the facial tics and nervous twitches I sometimes get when I'm feeling particularly ill could classify there. I had an especially interesting conversation a few months ago when I realised that I do have very particular communication difficulties which are new since my illness. I find it very difficult, in conversation with a group of people (or sometimes with individuals) to adapt to a change from 'output' to 'input', or to sudden changes in direction of the conversation, or to new topics - it takes me several seconds to adapt to such changes. I realised that I compensate for that in various ways. And I discovered that there are specific neurological tests that I can get done to explore those problems...and I'm pursuing that at the moment.

I was never sure that I really had the muscular signs either. But I've been known to fall over in the street because my leg muscles started spasming and feeling like jelly, and when I'm feeling ill I do have to walk with a curious gait because my muscles don't respond normally. I've had some issues with joint pain, but again, not severe.

So: to come back to the CDC's quote:

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

The fear that this line of definition (and it is purely a question of definition of terms, which are always somewhat artificial) provokes in me, is that "CFS" comes to be defined clearly as something which cannot, does not, may not include neurologic and muscular signs.

This is precisely the trick that Wessely, White et al. appear to pull when they define "CFS/ME" cohorts for study, and specifically exclude anybody with hints of neurological and muscular signs.

Just about everybody I've interacted with here, and elsewhere, who has this illness, whether defined as "CFS", "ME" or "ME/CFS" - all of us have this broad pattern of symptoms as per the CCC. We may not necessarily have the classic ME pattern but we do all seem to have some kind of neurological, immunological, and muscular problems.

So the line that you and the CDC appear to draw, in combination with the approach taken by the Wessely school to studying cohorts of "CFS/ME", appears to exclude myself, and nearly everybody I know from any diagnosis. I cannot have "ME" if I lack the specific criteria you define, I cannot have "CFS" because I have (undocumented) neurological and (documented) immune problems. And there is nowhere left for me to fit, because ME has a specific diagnosis, CFS is increasingly an attempt at definition of something that 'by definition' can't be a real physical illness, and the illness which millions of us have, which fits well into the broad pattern defined by the CCC, has no place anywhere. And although it's always possible that I have some other undiagnosed condition (which likely would be a syndromatic condition anyway), after 15 years nobody can seem to find that, and it's certainly not for want of trying from my very diligent and honest GP who is trying yet another round of tests this week.

So my question really would be this: If you are saying that the CCC defines a cohort which may contain some people with historically-defined ME, but that many of those people fitting that definition do not have historically-defined ME, and if the CDC and the Wessely school are saying that neurological symptoms etc (which CCC patients have) are exclusionary for CFS, then where does that leave the CCC patients who do not have ME?

There appears to be nowhere for us at all, and there seem to be an awful lot of us in that category - the majority, even, from what I've seen (it's extremely hard to judge though, of course).

My apologies if these questions are repeating what's been dealt with on this thread already - regrettably I haven't had time to read through all of it but I'm going to go back now and have another look at some of the references you've asked me to look into, including the 'wrong diagnosis' list...just in case I do fit in somewhere...

 

[Bob]

Hi Mark,

It's interesting looking at Byron Hyde's work because he effectively leaves no one undiagnosed.
He either diagnoses 'ME', or finds out what other disease his patients have.
I think there are a rare few who he cannot find a diagnosis for (can't remember the exact figure - I'll look it up), but these really are only a tiny number who he can't diagnose.
I think that to diagnose ME, he doesn't just look for obvious neurological symptoms, but does a very full and long look at his patients' entire history of health.
So, for example, he would look at all of the symptoms over the course of the illness (subtle and obvious), the type of onset, course of the illness, etc etc etc., and he wouldn't just rely on the fact that your neurological symptoms are not very pronounced.
He also uses SPECT scans as one of his diagnostic tools.

Here's a long list describing the complex approach to diagnosis that Hyde uses:
http://www.hfme.org/testingforme.htm

It's a very complex subject area, and i haven't got my head around it all yet. I'm still learning.
The thing that i've learnt from this thread is that if we were to use a definition of ME which was based on the historic knowledge of 'ME', then we wouldn't need to keep the 'CFS' diagnostic criteria or a 'CFS' disease, because 'CFS' would be superfluous.
People would either have 'ME', or an entirely different diagnosable and treatable disease. No one would be left without a diagnosis. (In theory at least.)

You might find reading some of the Ramsay definitions of ME interesting, because you might find that you recognise the descriptions of your own illness, like I did with mine.

I'm not sure if I personally subscribe to all of Byron Hyde's work and opinions, but his work is very interesting, and I'd like to see him expand his work to work collaboratively with other researchers in the ME/CFS field.

Bob



Here's Byron Hyde's position on the 'CFS' diagnosis, in case you are interested:
http://www.hfme.org/cfsmustbeabandoned.htm

 

[Bob]

I've found it:

Thanks to the assistance of many medical practitioners and scientists, investigational research slowly advanced until by 1998, Dr Hyde was able to diagnose the cause of the M.E. and CFS type illnesses in 90% of the patients who came to his office for investigation.

http://www.nightingale.ca/index.php?target=aboutdrhyde

So that leaves only 10% of patients who he can't find a diagnosis for...
I will try to find more details about this 10% who he can't diagnose.

 

[insearchof]

Hi Mark,

I have to say, that I also noted the emphasis on the selection of neurological and muscular symptoms by the CDC and frankly, did not take too much notice of that.

It is hard to know the points of distinction on muscle and neurological symptoms they see from ME, when they fail to provide details, and especially given that these are also elements (secondary) of their diagnostic criterias be it Holmes 1988, Fukuda 1994 or the New Empirical definition of 2005.

However, that quote is significant to me, for the reason that the CDC acknowledges that ME has a case definition distinct from CFS, which is supported when you analyze both side by side.

Just about everybody I've interacted with here, and elsewhere, who has this illness, whether defined as "CFS", "ME" or "ME/CFS" - all of us have this broad pattern of symptoms as per the CCC. We may not necessarily have the classic ME pattern but we do all seem to have some kind of neurological, immunological, and muscular problems

.


I agree with this, and as far as definitions and guidelines go these move closer to the historical literature on ME and at a minimum convey a picture of serious underlying biological causes, and which calls for physicians to re evaluate patients every 12 months.

So the line that you and the CDC appear to draw, in combination with the approach taken by the Wessely school to studying cohorts of "CFS/ME", appears to exclude myself, and nearly everybody I know from any diagnosis

Not the line I draw, but ....the point you make is precisely why, the historical literature on ME needs to be resurrected and promoted, with a move away from CFS definitions.

I cannot have "ME" if I lack the specific criteria you define, I cannot have "CFS" because I have (undocumented) neurological and (documented) immune problems. And there is nowhere left for me to fit, because ME has a specific diagnosis, CFS is increasingly an attempt at definition of something that 'by definition' can't be a real physical illness, and the illness which millions of us have, which fits well into the broad pattern defined by the CCC, has no place anywhere.

Firstly, I would not say that the CCC CFS definition has no place. It is used and recognized in Canada and is being promoted in other countries. It is also being used in research, albeit the CDC criteria and its approximates, are more commonly used.

Secondly and more importantly, I would say this to you and everyone that fits the CCC CFS criteria. From my own personal observations many such patients do appear to fit the historical literature on ME. If they do not fit there, then they would have either PVFS classification with CNS/ANS dysfunction or a illness that mimics these. These patients would not, as you say, have no place within medicine.


The reason I have spent so much time researching historic ME and trying to raise awareness on the matter is (unless you have not had a thorough medical work up and an underlying cause has not been detected) :

I believe that many people who fit the CCC CFS criteria may have ME

The historic literature on ME needs to be promoted so that medical practitioners are aware of what it is and can offer a patient this diagnostic assessment which would need to be done, prior to considering CFS.

If this is done, less people would be given a CFS diagnosis, and as a result of consideration being given to the possibility of ME and the investigative measures needed to make a ME diagnosis, most people are more likely to receive more thorough investigative medical work ups, which might indeed determine underlying causes if ME is not the patients illness

If matters were approached this way, and the breadth and unsuitability of these criterias were pointed out and how they continue to fail patients (ie in getting proper medical investigative work ups and thus getting to the bottom of potential underlying causes missed in some cases) we would not need to worry so much about what Wessley et al were doing.


There is also a misnomer that the historic ME literature presents a very restrictive or narrow criteria. Although specific, it is not as narrow as a lot of people fear. As stated before the CCC CFS criteria approaches the historic ME literature.

Also, I know of patients whos doctors have not asked the right questions in taking a medical history or have not paid attention enough to symptoms, which may be subtle or less obvious - just as you described regarding some of your own symptoms.

Sometimes, the patients themselves forget or dismiss things that they dont think were important or view their onset for example as gradual and therefore do not consider the possibility of ME, when in point of fact if you question them closely (and you look at the historic ME literature) they had what only appeared to be a gradual onset. These patients might have a pre-existing illness of short duration for example many months before, which set them up for the subsequent enteroviral infection (which can be mild and is usually of a short duration and might therefore be down played by the patient in comparison to the preceeding illness). However, for some reason they might only remember the first illness, because when asked (and of course the ME affected brain will usually interpret things quite literally) the familiar question by most doctors: When did you first fall ill?, this understandably, is where their recollection takes them, especially if they had enjoyed a relative period of good health prior to that point. The second illness which may well be the enteroviral illness which triggered all their ME symptoms, might be therefore down played and or not mentioned at all.
All these issues are discussed and can be found in the ME literature.

The more I read and learn about historic ME from the literature, the more people I see who have a CCC CFS diagnosis in particular, there.

I would really like to see these people do all they can to get the tests recommended for ME and if these patients are scheduled for gastrointestinal procedures (as gastrointestinal complaints are common in ME) then I would encourage them to take that opportunity to get an enteroviral tissue biopsy done by Dr Chia. It is very easy to do and can be posted to his laboratories in the USA from anywhere in the world. Now if we could encourage all patients with a CCC CFS diagnosis, to do this when and if able, and collate these findings, together with their other test results recommended by the ME literature we would be moving forward and leaving CFS criteria and questionable fatigue studies being poured out by Wessley et al, behind.

Further, it is an area that is so closely associated to Polio and polio epidemics, that this factor needs to be emphasised. Enteroviral research with a view to developing vaccines and antivirals has suffered, but is making a comeback primarily because some enteroviral strains are causing deaths in children, once more as they did in the early polio epidemics. Of course enteroviruses are also known to be associated with heart problems (a common issue with ME patients), diabetes, and other illnesses and should also be studied for these reasons.

The enteroviruses that cause polio (poliovirus 1-3) have also been found in ME patients, in addition to what are today called, non polio enteroviral strains (predominantly coxsackie).

ME was once called atypical polio or non paralytic polio.

Prior to 1958 ME or atypical polio on non paralytic polio was all classified as polio. Thereafter, only the polio enteroviruses 1-3 that commonly caused paralysis (though some of the other enteroviruses do as well) were called polio even though they constituted less than 1% of the 5% who were diagnosed with polio.

Everything else (ie atypical non paralytic polio ME) was regarded as and classified as something else ie aseptic meningitis, coxsackie infection (enterovirus) Echo infection (entrovirus) etc, but not polio or non paralytic polio.

The non paralytic polio cases constituted four fifths of all polio cases in epidemic outbreaks, however it was the paralytic cases that were given the greatest care and attention at that time, for obvious reasons.

When paralysis disappeared due to polio vaccinations, non paralytic polio cases became lost from view and a skewed picture developed that polio in all its guises had vanished. It had not. Atypical Polio or ME began to take off with a vengeance from 1978 as reflected in the research performed by Ramsay and Dowsett. Why? It is speculated by Dowsett and Richard Bruno of the Post Polio Institute in the USA, that with the polio enteroviruses that were causing paralysis curtailed, that this left a vacuum to be filled by the other competing enteroviral strains, which became more virulent by passing through successive hosts. There may be other factors which contributed to this explosion as well ie: disease patterns ie the relationship between flu and encephalitic outbreaks witnessed around polio epidemics, not to mention the failure on the part of governments to simply let polio and general enteroviral education and research slide.

The world was justifiably horrified by the suffering inflicted on those who incurred polio.

The world needs to know, it is still with us. The world needs to know what ME really is and what many of those who they claim to be simply tired have: an old fashioned communicable disease once known as polio.

I want to encourage as many people as possible to pick up and read and get familiar with the historic literature, because it is my belief, that many people will see themselves there, as well as the historical association with polio and this in turn, should give most people a greater appreciation as to why this is all so very important.

I would also like to see a bridge of some sort being built - that can make the ME literature more accessible/understandable to everyone, because it is my belief that many people will see themselves there and be encouraged to put this information under the noses of doctors and back onto the radar of physicians, and to get the necessary tests done.

(On this note, there is a lot of excellent information available at HFME, though over the years it has grown and what might assist people there is a search function on that site, but I would still encourage people to access the information there, because it is set out under well tabulated/defined areas. )

That way, we should have medicine moving towards more extensive investigation of patients generally, (either towards confirmation of ME diagnoses or another underlying cause in the event ME is not confirmed) and thus, leave concerns about CFS and all its variety of definitions, as well as fatigue related studies, CBT and graded exercise behind.

 

[Mark]

Thanks ISO, very good and informative post.

I particularly agreed with this point you made towards the end...

I would also like to see a bridge of some sort being built - that can make the ME literature more accessible/understandable to everyone, because it is my belief that many people will see themselves there and be encouraged to put this information under the noses of doctors and back onto the radar of physicians, and to get the necessary tests done.

(On this note, there is a lot of excellent information available at HFME, though over the years it has grown and what might assist people there is a search function on that site, but I would still encourage people to access the information there, because it is set out under well tabulated/defined areas. )

..., because I had precisely the same impression myself from my visits to HFME: that one area where the content does seem to need some updating is in its presentation and indexing. When I've been referred there in the past, somehow the presentation and sheer volume has seemed overwhelming. In particular, the material might benefit from being subdivided into more easily digestible and indexed chunks, and with some work on the fonts etc. At the moment - and this is just my personal impression - it seems to be presented in a way that's hard to digest.

On the subject of search functionality, specifically, a good tip is to take advantage of google where a site lacks a good search facility. A Google search including "sitehoenixrising.me" or "site:hfme.org" in the search string restricts the search results to that site, and is often better than the site's own search function. Such a search can perhaps even be built into the website itself, although I'm not sure whether you'd have to check the legal restrictions to be sure as to exactly how that must be done.

Another problem I've perceived is that - without wanting to be too critical - sometimes the individuals who have presented this message about ME in the past have seemed to me to be doing so in a way that antagonised people and appeared to belittle people with the label "CFS", suggesting they had a possibly psychological issue that was of little concern. This is perhaps just a few individuals that I'm referring to, and I can see that wasn't really the intention, it's probably just a matter of language, assumptions and perceptions, but (for example) saying something like "CFS doesn't really exist" could of course be misinterpreted in a number of ways, and there's been quite a bit of misunderstanding there I suspect.

But interestingly, your position in your last post seems so close to that of the consensus we seemed to establish here recently regarding the CCC, that we may now be so close in what we are arguing for as to be dancing on the head of a pin somewhat, when we think we disagree. Anyway, I'm in optimistic mood right now because I do hope this thread can lead to greater mutual understanding and it seems to me that it is doing so.

 

[Bob]

... we may now be so close in what we are arguing for as to be dancing on the head of a pin somewhat, when we think we disagree. Anyway, I'm in optimistic mood right now because I do hope this thread can lead to greater mutual understanding and it seems to me that it is doing so.

Yes, this thread has been very productive Mark. I think that quite a few of us have reviewed our previous opinions, whatever our original points of view on the subject were, and we have moved closer together in understanding each other's perspectives, and understanding the subject more deeply.

On this thread, I've discovered that nearly all of the usual heated disagreements surrounding this subject are almost purely due to misunderstanding each other's perspectives, and due to the need for very careful wording with such a sensitive subject.

This thread has developed into a very positive and supportive discussion, after a few initial teething problems which I think were purely due to misunderstandings. It's actually been one of the most productive threads that i've been involved with.


Just to emphasise again, that no one is suggesting that using a more specific diagnostic criteria should, or will, exclude anyone with CFS, or leave people on a CFS scrapheap. The intention is actually completely the opposite to that...
By using a more specific criteria, the theory is that all patients would either get a new 'ME' diagnosis, or they would get another appropriate diagnosis and proper treatment after a full investigation into their health. So we would all get a brand new diagnosis, and no one would get, or be left with, a 'CFS' diagnosis.

This is the theory anyway. I don't personally think it would work so well in practise. Not for a few years anyway.

In this situation, a 'CFS' definition would be superfluous. It wouldn't be needed anymore. Everyone with a current 'CFS' diagnosis would get a brand new diagnosis. No one would get a 'CFS' diagnosis. 'CFS' is currently what doctors get left with when they can't work out what is causing the fatigue. Once they have ruled out other diseases, then they just say you've got 'CFS', whatever is causing the fatigue. So the current 'CFS' criteria do not define an actual disease. 'CFS' is an unhelpful non-diagnosis which we all get dumped upon us because the doctors don't understand what is wrong with us, and can't be bothered to investigate. It's an easy opt-out for doctors because it allows them to avoid difficult investigations. So if patients were properly investigated, then 'CFS' wouldn't be needed anymore, once we all got proper and full medical investigations, and a proper diagnosis.

That's the theory anyway, but I don't know how changing the diagnostic criteria would work in practise, at least initially.
Personally, I think we would need to do it in step changes, with the CCC being a good starting point. But as other's will point out, the CCC does not describe historic 'ME', so some people don't see how it can be at all helpful for people with historically recognised ME, even as a stepping stone.

Like I said earlier, Byron Hyde diagnoses 90% of patients who visit him, leaving 10% undiagnosed. Now, these 10% are very important, and I wouldn't want those patients to be left without a diagnosis, so this is something we need to consider in the discussion. But their current diagnosis, of 'CFS' is probably very unhelpful for them anyway.

We have a very long way to go before an 'ME' diagnosis becomes the norm, but I think it would be very wise for research to be carried out using specific criteria. For example, Byron Hyde could team up with the WPI, and see how many of their patients fit into his criteria. If it was all of them, then that would be very useful to know. Also, Byron Hyde could look at John Chia's patients to see what percentage of enterovirus-positive patients fit into Hyde's definition. It would all be valuable knowledge to have.

I currently have the UK's standard CFS/ME diagnosis, so I don't know if I have the historically defined 'ME'.


In this post, except where I've specified that I'm expressing my own opinions, I have tried to represent a perspective expressed in much of the discussion on this thread, but I might not have done so accurately. So I hope anyone will free to correct me if I've misrepresented any of our discussions.

 

[insearchof]

Hi Mark & Bob

Mark, I think you have reason to be optermistic -and as Bob states, it has been a very productive thread -after a bumpy beginning.

As for us dancing on the head of a pin - I am not sure about that analogy - its always one I have personally had trouble with -but that's just me. but I think we can say that I agree, that the distance is not as great as was perceived. Hopefully the stance on the part of ME advocates on strict case definitions and distinctions, being sticklers for the correct use of terminology, and the due recognition of historical data, is appreciated as something more important than stubborness and a desire to be argumentative

ISO:

more I read and learn about historic ME from the literature, the more people I see who have a CCC CFS diagnosis in particular, there

I wanted to take up this point again.

As I said to Bob a few posts back, similar is not the same and what might* appear* to either of us to be ME may well be something else. I maintain, as does the CDC, that both illnesses have different case definitions and it is only with the testing suggested in the ME literature, that a proper assessment and diagnosis can be made. Its not a long or complex list and there is a good article on it at HFME and or alternatively, a very good easy to read cheap little book on this subject and written by Hyde (Missed Diagnoses) is a great investment and would be ideal to give to a busy doctor.

So even though I believe many with a CCC CFS diagnosis may well have ME and need to have this investigated, unless and until they do they will be none the wiser.

Further, because of this fact and the failure to recognise and up hold the two distinct case definitions, CCC CFS research will not be of much use to either patient group. Precision in scientific co horts is very important. As is the need for thorough investigative medical assessments of patients.

The CFS criterias are also so wide, that they lend themselves to missed diagnoses.

These last two points are also very important and are emphasized by Hyde.

All these points are emphasized to varying degrees by ME advocates with some advocates simply placing more of an emphasis on some points than others.

Collectively, they are all important and necessary and go to explaining the reason why and the need to, move away from the CFS definitions and to resurrect and embrace the historical ME literature, and promote it - as explained in my previous post.

I think Bob's summary is pretty good.

With the 10% that Hyde cannot diagnose, he has been reported as saying that this is due to his personal failings as a physician. So that 10% may have illnesses that could be diagnosed by another. Frankly, I think Hyde is being terribly hard on himself as he is an excellent and dedicated medical detective and a 90% strike rate is excellent by anyones standards. But we are all human and we all have off days and or cases we cant crack'for whatever reason. So I think 90% is excellent over all in terms of his performance and also for what that statistic has to say about our discussions generally.

This is the theory anyway. I don't personally think it would work so well in practise. Not for a few years anyway.

There are a couple of ways for individuals to have their doctors consider ME in practice. In fact I think rlc posted on this only a few posts back. So as an individual who wants to be considered for an ME diagnosis, there are ways to gentley steer a doctor towards this. I know others who have done so successfully in circumstances where ME was not known to their doctors. So there is no need to think that this option wont be available to you for a couple years. It is an option available to you now. What you need to do is look at ways in which this can be done, operating within any current constraints of your countries medical system.

Bob:

We have a very long way to go before an 'ME' diagnosis becomes the norm, but I think it would be very wise for research to be carried out using specific criteria. For example, Byron Hyde could team up with the WPI, and see how many of their patients fit into his criteria. If it was all of them, then that would be very useful to know. Also, Byron Hyde could look at John Chia's patients to see what percentage of enterovirus-positive patients fit into Hyde's definition. It would all be valuable knowledge to have.

The challenge for ME advocates and us all, is how to effectively move things forward and we cannot afford to wait another 25 years. Time is of the essence especially when you consider Byron Hyde is not getting any younger (sorry Byron , in point of fact none of us are!)

It might seem like we have a long way to go, but each step taken towards a goal gets us closer to it.

Some ideas on what might assist in moving things forward on this level are:

* getting wider support for something like the Nightingale Definition

* supporting Byron Hyde and his message/work

* begin to have the Nightingale definition used to select a spefic ME co hort as Bob suggests - this would elevate awareness and aid research findings

* commence an education campaign on the need for these matters

* commence a general education campaign directed at physicians specifically aimed at resurrecting the historical medical literature and promoting diagnosis and review of patients (especially those with CCC CFS diagnosis and that present with a picture resembling ME) for consideration of ME.

* Have Hyde train (by way of seminar training) a number of physicians from various countries on how to diagnose ME etc - with a view to them hopefully carrying on his work in these countries

* promote enteroviral research to raise awareness and further promote the need for greater attention to ME in clinical settings

* promote awareness of the extent of missed diagnoses in patients with CFS as reported by Hyde and Miraz - and the potential lititgious consequences to encourage doctors to provide all CFS patients with more thorough medical assessments and diagnostic considerations

* an ME patient advocacy group that acts as an intermediatory in assisting patients in communicating and negotiating with their doctors to have these tests and diganoses investigated and promotes educational material/seminars to doctors on ME

One way to tackle all of this, is to promote an ME (Historical) international conference covering such topics, inviting key stakeholders and interested parties and facilitating and driving them towards these desired outcomes.

Alternatively, embracing a combination of above would at least be a step in the right direction towards moving us all much more quickly towards a much happier outcome for all concerned.

 

[rlc]

Hi Mark, Thank you!! Apology accepted!! I do appreciated that were all very tired and sick, and that this tread is presenting a large amount of new information and its getting very hard to follow at times, and to read everything.

My feeling regarding XMRV is that its something best left to the retro virologists to sort out. But this tread is coming up with a lot of information regarding ME not being CFS and that there are enormous numbers of misdiagnosed people, and I personally feel it is essential for everybody to know about this, because it is something that if even a small number of people are aware of, there is the potential for some extremely successful advocacy being done based on this knowledge.

Im going to split this post into two sections, one just to try and explain where Im coming from regards XMRV and ME in my post a while back, I dont feel its of major importance, except for people realising that there have never been a group of people from an ME outbreak tested for XMRV and that previous Monkey studies in the past from ME outbreaks have shown extremely different results from the XMRV monkey studies. In the second part Ill try and explain how I see the situation regards ME not being CFS and the Large number of misdiagnosed, because this is an area which if we focus on getting some advocacy done based on these facts, things can be done that could change this whole situation for the benefit of everyone.

Part one.

Regarding how to find on the WPI site the information on who the WPI selected for their study if you click on the link that I provided in my original post, which I will post for you again here http://www.wpinstitute.org/research/research_biobank.html

If you click on this link. On the page you will find it says What about Dr. Peterson's private repository? View answer if you click on view answer, it says

Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study.

On this same page where it says where did the samples come from for the XMRV study? Click on where it says view answer and it says

The WPI repository samples came from patients who live in many different locations around the US. Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.

Where it says How were the patients diagnosed? click on view answer it says

Patients were physician diagnosed using the Canadian Consensus criteria and the CDC criteria and after exclusion of other inflammatory and autoimmune diseases.

So on their own web site it quite clearly says that they didnt test patients from ME outbreaks, even though they say they have samples from the Incline Village (Lake Tahoe) outbreak.

Therefore Dr Mikovits statement in the original Scientific America article is not correct. If you want to take the view that Dr Mikovits was somehow misquoted thats fine. But it still leaves the question of why as this is supposed to be the WPIs ground breaking paper and the most important finding in the lives of the people involved, so I would take it as read that all of the WPI people involved would have read the Scientific America article as soon as it came out. Why did the WPI not immediately give a public statement saying that they had been misquoted, and do everything that they could to make the world aware that the samples tested did not come from previous recorded outbreaks. As you would normally expect in this kind of situation.

Because the original statement by Dr Mikovits was not immediately corrected this has understandably upset a lot of people, especially in the ME community whose hopes were raised when they were lead to believed that the findings were related to previous ME outbreaks.

I did try and make it very clear in my original post that I was talking about the scientific America article, by saying

When the WPI announced its original findings to the world Dr Mikovits said this to Scientific America and provide the link to the original article http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus and copied the exact quote from this article to make it easier for people to read

To find the retrovirus, Mikovits and her team studied documented cases, such as CFS outbreaks in a symphony orchestra in North Carolina and in Incline Village, Nev. "We found the virus in the same proportion in every outbreak," she says. But how are people getting this retrovirus?

But like I say I do realise were all very tired, and that Im often writing long posts with a lot of links, the reason being that its a very complicated subject and a lot of the time theres no way to try and explain it properly in just a few paragraphs. Sorry if you found my wording on the subject a bit blunt, we do have a bit of a reputation in this part of the world for saying it like we see it. And personally on any subject regarding science I do get somewhat annoyed if scientists make statements that arent 100% exact because to me thats what science is supposed to be about.

Look forward to communicating with you in the future, and hope that your recent testing comes up with some helpful results!!!

Part two

My feeling is that this tread is providing information that has the potential to turn advocacy for ME and CFS on its head and produce results that can help vast numbers of people. By raising awareness, that not only is ME not CFS, but people diagnosed with CFS are often misdiagnosed and are really suffering from a known and often treatable illness.

The reason why this is important is because for a long time the majority of Advocacy has been based on the false belief that everybody has the same illness and demanding that a cause and cure be found for it. Obviously as the people who get these diagnoses have a large collection of different illnesses then this is never going to happen and peoples good intentioned efforts are unfortunately being wasted.

For any kind of success to be achieved, advocacy has to be based on finding ways to get everyone their correct diagnosis and the help that they need. It is not the view of a few individuals here that ME is not CFS, it is the View of The World Health Organization, The Center for Disease Control, Vast amounts of published Medical literature by Vast number of Highly qualified Doctors and Scientists, and current living doctors who can be bothered to pay attention to whats really going on such as Hyde, Dowsett!

At present the likes of the CDC who acknowledge on their own web site that ME is a very different disease then CFS are doing a grand total of nothing about it! Which is something that needs to be changed, As it is the job of the CDC to prevent and control diseases, which they arent doing in the case of ME. Because of this Id say there is a very good chance for a successful class action law suit against them for ignoring a World Health Organization recognized disease.

There is also the matter of the CDC claiming that they invented CFS on what happened at Lake Tahoe. But what happened at lake Tahoe was ME and they knew it, and knew exactly what ME was, and knew that the patients at Lake Tahoe had had MRI scans that showed AIDS like lesions, all of which the CDC deliberately ignored when they wrote the first CFS Holmes Definition, I have a lot more information on this whole episode which I will hopefully find the time and energy to write up and post soon!

It is also not just the opinion of a few people here that vast amounts of people with a CFS diagnosis are misdiagnosed. It is the opinion of highly qualified Doctors, the recent NHS study found 40% misdiagnosed. http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf Without looking anywhere near as hard as other doctors.

Dr Hyde finds that in his patients the majority of which are Canadian and are diagnosed using the CCC, that only 25% have ME, in the other 75% he is able to find what is really wrong with them missed major disease! Up to 80% of the time and blames his failure to find the cause in the rest on his own failure as a physician, not because they have some new mystery disease. http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf

Dr Shirwan A Mirza has this to say on the subject. I can say with confidence, backed up with data of hundreds, or even thousands of patients with fatigue who I have helped over years, that patients with chronic fatigue syndrome are patients who have not been adequately worked up in accordance with the criteria mentioned above. It is for this reason that CFS is not in my medical vocabulary.

For those who dont know who Dr Mirza is, he is not a CFS doctor; he is a highly qualified Endocrinologist, A clinical Assistant Professor, and one of the elite doctors in the USA, who works at Auburn Memorial Hospital New York, and in private practice. In his articles, which he wrote to the British Medical Journal in an attempt to get the Medical profession to realise whats going on, he rips the recent CDC and NICE criteria to shreds for containing blatantly false information on how to test for certain illnesses, not containing instructions to test for very common illnesses that cause the same symptoms as those attributed to CFS, and being woefully out of date in regards to information that the reference ranges used by most laboratories in the world to test for very common illnesses, have been scientifically proven to be wrong for years leading to millions of people being misdiagnosed. It isnt just his opinion that certain reference ranges are wrong e.g It is the American Association of Clinical Endocrinologists that are saying that the TSH (Thyroid) reference ranges are very wrong. And this is leading to Tens of millions of people not having their Hypothyroidism diagnosed and treated, and are instead getting a CFS or some psychiatric diagnosis like depression instead. This is all explained here

http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

The two articles By Dr Mirza can be found by scrolling down these pages for

The myth of chronic fatigue syndrome by Shirwan A Mirza

http://www.bmj.com/content/334/7605/1221/reply

NICE and CDC miss the boat by Dr Shirwan A Mirza

http://www.bmj.com/content/335/7617/446/reply

Of course these arent the only things he tests for, but they are the tests for things that are very commonly missed due to following the guidelines laid out in the CFS diagnostic criteria he explains more in this article A Judicious Evaluation of unexplained symptoms http://www.bmj.com/content/336/7653/1124.extract/reply found by scrolling down this link, Amoungst other things he says

If these tests are done in the right clinical context, they bring a lot to the table in terms of clarifying mysterious symptoms. Of course every patient with unexplained symptoms should have a baseline CBC, to rule out anemia, or cytopenias, comprehensive metabolic panel and magnesium levels, to rule out renal, hepatic, and electrolyte derangements. Finally, attention to sleep hygiene, and optimal blood pressure and lipid profiles, is important. I have seen many patients who present with fatigue or unexplained cognitive function because of uncontrolled hypertension, or severe hypertriglyceridemia. I usually tailor these tests to specific patients rather than doing them all in every patient.

If we are too lazy to do the right evaluation, more of our patients come to us with "unexplained symptoms" and it would be convenient to label them with depression, chronic fatigue syndrome, and similar "empty" diagnoses.

Although this information is all very interesting from a personal level with regards to finding out other tests that people could get their doctor to do to find a correct diagnosis. As far as advocacy goes its extremely important!!! Because we can have whatever opinions we want, but because were not medically qualified they can be ignored. But in these articles there are Highly qualified doctors saying that the CFS testing guide lines are garbage and that CFS is a Wastebasket diagnosis and have the case notes to prove it and judging by the tone of their articles would be more than happy to tell anyone else about it, its just a matter of getting the right people to talk to them and getting the information known on a far larger scale.

Id just like to say again that when Im saying that CFS is a waste basket diagnosis that doesnt mean that Im saying people arent sick, quite the contrary a lot of the illnesses mentioned in these articles will be fatal if left untreated. Id also like to say I sometimes see comments that imply that people with psychiatric conditions that get misdiagnosed as CFS are somehow not as serious. This is not the case, an illness like Major depression has a very high risk of death due to suicide and the people with it often suffer terribly, if these people are being misdiagnosed as having CFS which stops them from getting all the effective treatments for depression then this is a tragedy. Everybody has to get their correct diagnosis no matter what the illness is. And CFS needs to be exposed for the wastebasket diagnosis it is for this to happen.

Know Im going to try and explain a few things on a couple of subjects which do have the potential to upset a few people, this is not my aim I just trying to explain why certain things are happening.

As I explained earlier a lot of Dr Hydes patients are Canadian and have been diagnosed using the CCC, but Dr Hyde finds that 75% of them have been misdiagnosed and have other known major diseases and only 25% have ME. And as we have been discussing in this tread the CCC definition does not define the ME that is found in all the literature pre 1988 and does not match the Ramsey and Nightingale definitions and isnt the diseases recognized by the WHO or the CDC. The Answer to why this is happening can be found in the references of the CCC which can be found in the longer version of it here http://www.cfids-cab.org/cfs-inform/CFS.case.def/carruthers.etal03.pdf

The CCC quotes 237 articles that it has used as its references; the information in these articles is what they have used to write the CCC. In these references you will find a grand total of zero references that apply to ME as defined in the historical literature, including none whatsoever of the thousands of pages of previously published medical and scientific research on ME pre 1988, they dont even have the Ramsey definition in it, the second edition of which was published in 1986, all of the previously published information on ME was at the time available for them to read in the medical journals, and in 2003 a lot was also available on the internet.

The references that the CCC uses include a large number of works written by the CDC and the Wessely school, which contain a vast amount of lies and the writers of the CCC also reference their own work continually, but there are no references to any of the vast volume of works about the ME that can be found in the medical literature starting from 1934.

It at first seems completely baffling that they would use the name ME in their definition and not of read any of the easily available information about it. My feeling is theres probably a very simple answer to this, and my suspicion is its all to do with location, it has been a widely held view amongst almost everyone in North America that ME is just the English name for CFS and there has been almost no recognition that in England up until 1988 ME was actually the name of a very different disease and that the American name for ME had been since the 1950s Epidemic Neuromyasthenia. I suspect that they; and their references do confirm this, were quite unaware of what ME used to be and what its symptoms are. And that what they actually mean in the title is more along the lines of ME also known as CFS. Which has been the mistaken assumption in North America for a long time, but it is as medically incorrect as saying Diabetes also known as leprosy.

So because of this its more of a greatly enlarged CFS definition in which they have included a lot of the other symptoms found in people that have been misdiagnosed as CFS but actually have other known diseases and some of the symptoms of ME patients all of which have been caught up in the drag net of the CFS definitions. The unfortunate consequence of this is that it is as much a definition for Addisons disease, Lupus, Lyme, MS, Acute Intermittent Porphyria, Hemochromatosis, Lead Poisoning etc, etc as it is of CFS, because it is actually a description of a large number of different known diseases, which is why Dr Hyde finds so many people misdiagnosed. And it isnt a definition that can accurately diagnose ME.

A lot of this confusion stems from the way it is laid out, and that you only have to have a few symptoms from different sections e.g. you only have to have one symptom from the Autonomic Manifestations section, but one patients symptom might be urinary frequency and bladder dysfunction and another patients symptom might be POTS in which case its very likely that the two patients have different diseases. The same applies with other sections like Neuroendocrine manifestations one patient might have subnormal temperature and another patient might have marked weight change, yet they both qualify for the same diagnosis, theres a lot of room for mistakes to be made because of this.

I think a lot of people relate to it because it is written with a very sympathetic attitude towards the sufferers and takes them very seriously and because it has so many extra symptoms a lot of people will be able to find the symptoms they have in it, but this doesnt mean that its giving people a correct diagnosis.

My personal feeling is that the Nightingale definition supersedes all the other definitions for the simple reason it uses modern technology such as SPECT scans that can assure an accurate diagnosis. And as Dr Hyde finds that a lot of patients diagnosed using the CCC are misdiagnosed then I dont think it should be used because we dont want people being misdiagnosed. I think we need to get away from definitions and words to diagnose illness, because it is only in the ME, CFS world that this happens, all other diseases are diagnosed by testing, and if the powers that be want to say that CFS is a disease of exclusion then people have to be tested for all other possibilities before anyone can even consider giving CFS as a diagnosis.

Once again Im not trying to upset anyone, but there are a lot of Doctors around the world who have set themselves up as being experts in CFS and charge a lot to see patients and are frequently writing about their latests theory on what causes it and what supplements etc to take. The question I ask myself and would recommend other people asking themselves is this, why if there are other doctors on this planet who find that their CFS patients are misdiagnosed in staggering numbers to the point that they cant find anyone with it! What exactly are these other so called CFS expert doctors up to. Why are they not also making a fuss about how many people they are finding that are misdiagnosed???

Personally I think the answer lies in the habit of people to see only what they look for, so CFS doctors see only CFS so they dont test for other conditions, whereas the other doctors dont believe in CFS so they test for everything until they find what is actually wrong. Another part of the answer lies in the backgrounds of most of the CFS expert doctors, if you look into this, what you usually find is that qualifications wise they are just your standard family doctor, who has developed an interest in CFS, if you compare them to someone like Dr Mirza as far as knowledge of diseases and how to test for them goes, hes in a different universe. Any average specialist has done at least ten more years of training then your standard family doctor they know about things most doctors have never heard of which is why there able to find the correct diagnosis for their patients.

The other question to ask is, if there are doctors that have proved that CFS is a wastebasket diagnosis made up of a vast collection of different diseases with known causes and treatments how exactly is anyone going to find one cause of all of them??? By that I mean when some researcher starts saying that a certain virus is the cause of CFS, because I know that CFS is made up of large numbers of different diseases, I just think to myself here we go again with another waste of money.

As an example of this XMRV cant possibly be the cause of all the diseases that get misdiagnosed as CFS, and as the selection process that was used, as is always the case. Is not to test people to make sure they have all got the same disease, but to instead use diagnostic criteria such as the CDC and CCC which have been proven to misdiagnose people in vast numbers. So the research can only possibly be being done on a large group of people with different illnesses. And XMRV cant possibly cause all of these different diseases so therefore there has to be a fault in the research. I think Dr Singh explanation is very plausible, because the WPI didnt use the dUTP-UNG system on their PCR tests, it means that the only possible outcome is that they have contaminated their lab, its explained here http://forums.phoenixrising.me/show...-on-her-CFS-XMRV-study-and-the-WPI-s-Response Unfortunately once that has happened it becomes impossible to remove contamination and you basically need a new Lab.

All of this will stop happening if we can find a way to get everybody tested properly. The tests to diagnose ME already exist so they can be separated into a separate group and work begun to find a cure and possibly to immunize people so it gets wiped out as a disease. All the other known diseases that get misdiagnosed as CFS have tests for them and a lot of them have successful cures and treatments! If at the end of that there is anybody left who cant be worked out then they can start to see if there is some other mysterious illness involved and try and figure it out, but theres no point in try to do any research on anything until there is a clearly defined patient group all with the same illness!!

Obviously figures wise it hard to get an accurate figure on what is going on, but both Hyde and Mirza are saying its not too hard to find the correct diagnosis in 90% of cases and in none of those is it CFS, but these two doctors from what Ive read are using different methods so if their skills were combined then its possible they would be able to work out a lot of the others as well. And if some other diagnostic experts from around the world could be involved Id imagine the numbers that cant be worked out would be tiny, if any! And because CFS was invented based on what happened at Lake Tahoe which was ME, then there was never any evidence on which to have invented it in the first place. So I see it as being highly plausible that as no knew illness really came into existence at the time, then it is highly likely that everybody who is sick and got a CFS diagnosis has a already known and well studied disease.

My feeling is that if Advocacy can be based on the reality that everybody doesnt have the same illness, and that everybody with one of these diagnoses has to be retested until it is found what is really wrong with them. Then it has a chance of being very successful. And like I say there are some powerful doctors who could help in this.

However if advocacy continues to be based on the belief that everyone has the same disease, then it is not based on scientific reality, and therefore has no hope of achieving anything, and nothing will ever change!!

All the best

 

[Bob]

Interesting little bits of info from a 1978 article in the British Medical Journal entitled Epidemic Myalgic Encephalomyelitis.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf


"At a symposium held recently at the Royal Society of
Medicine to discuss the disease and plan research there was
clear agreement that myalgic encephalomyelitis is a distinct
nosological entity."

"From the patient's point of view the designation
benign is also misleading, since the illness may be devastating.
Originally the term was used because no deaths had been
recorded from myalgic encephalomyelitis."

"The adjective
epidemic is correct, since most cases occur in an epidemic, but
the disease may be endemic, and sporadic cases may occur."

"Nevertheless, the
organic basis is clear-from the finding that the putative
agent can be transferred to monkeys (14)" (as per rlc's posts)

ref:
(14) Pellew, R A A, and Miles, J A R, Medical3Journal of Australia, 1955, 2, 480.

 

[floydguy]

RLC

Hi RLC,

A very brief review of Dr. Mirza's work reveals he is only concerned with idiopathic fatigue. He talks about B12, thyroid, etc - I thought I was reading Jacob Teitalbaum. Does he address immune issues like low NKC, reactivated EBV, Coxsackie, HHV-6 and other infections, allergies, documented gut problems, high TGFBeta & C4a, etc, etc, etc.? So far I am not impressed with his "thoroughness".

I'd also like to note that I don't think it's quite as simple as you think. There are piles of people from the Gulf War, Chronic Lyme and other neuro-immune type diseases that are getting lumped into CFS. Do you really think that these people have a known but un-diagnosed disease? I don't. I think there is probably something between "real" ME and these other neuro-immune diseases. I, myself, am coming from the Lyme side where I had Lyme - clear cut case - but never got better.

However, I absolutely agree that it's worthwhile to attempt to sort out all these different groups. Certainly one very helpful thing would be to put together a list of doctors that do very thorough exams so people know exactly what is wrong with them.

Thanks,
Floyd

 

[insearchof]

A very brief review of Dr. Mirza's work reveals he is only concerned with idiopathic fatigue. He talks about B12, thyroid, etc - I thought I was reading Jacob Teitalbaum. Does he address immune issues like low NKC, reactivated EBV, Coxsackie, HHV-6 and other infections, allergies, documented gut problems, high TGFBeta & C4a, etc, etc, etc.? So far I am not impressed with his "thoroughness".

Hi Floydguy

From the articles posted, Miraz made the following points:

1. he does not recognise the diagnostic criteria of CFS because there is no need for it -because he

a. listens to a patient in an uniterrupted manner
b. takes an extensive history
c. orders tests
d. sees the patient more than once
e considers possible differential diagnoses

all before offering a diagnosis - which many physicians do not do today.


2. He is focused on identifying underlying cause.


3. Many people he has seen with a diagnosis of CFS had idopathic CF due to a failure on the part of their physicians to undertake a thorough work up which would have made ICF easy to detect and treat. However, this is not happening.

He is not primarily concerned with ICF but finding underlying cause, but in chasing that, he finds many cases of ICF (as you would expect to find in patients who's doctors have not given them a standard work up)


4. The impression I was left with was, that he may find the things you raise, but he would not consider or treat them as CFS. He goes beyond the limitations imposed by the definition and so, CFS is not something he concerns himself with. He would probably look at immune function abnormalities and illnesses associated with them. CFS is not even on his radar. My guess is, that if he believed this and could not diagnose your underlying illness - he would refer you to immunologists and associated specialists who shared his approach.


If my memory serves me, even under the CCC CFS criteria doctors must re evaluate the patient every 12 months. In running tests etc, this would also require a doctor to reconsider the diagnosis but doctors do not do this and patients are parked within a CFS criteria and treated as though they have this condition called CFS. You cannot treat CFS because it is not a disease -its underlying cause is not known, you can only offer symptom management. However, doctors forget this and the requirement under CCC CFS to re consider the diagnosis every 12 months. Of course not everyone has a CCC CFS diagnosis. That is not the point. The point is this. The reason it is there highlights the fact that a collection of symptoms (syndrome) does not excuse a doctor from considering and looking further, for underlying cause and yet that is what most do.

5. He is critical of the CFS diagnostic criteria primarily because the saliant feature - the key criteria and the first diagnostic hurdle you must jump over is unremitting fatigue for more than 6 months. Of course this makes it very easy to park a number of patients with ICF within this criteria without adequate work ups by incompetent, busy or lazy doctors.

I'd also like to note that I don't think it's quite as simple as you think. There are piles of people from the Gulf War, Chronic Lyme and other neuro-immune type diseases that are getting lumped into CFS. Do you really think that these people have a known but un-diagnosed disease? I don't. I think there is probably something between "real" ME and these other neuro-immune diseases. I, myself, am coming from the Lyme side where I had Lyme - clear cut case - but never got better.

Precisely the point Miraz and others on this thread are making. People with Lyme, GWS and other neuro immune illnesses should not be get a diagnosis of CFS - they should be getting a thorough work up and being diagnosed with Lyme, GWI and neuro immune diseases, not CFS. CFS is a diagnosis of exclusion. If people with these illnesses are being lumped into CFS and given a CFS diagnosis, then they have been misdiagnosed with CFS.


This is a direct quote taken from the CFS guidelines produced by the Royal Australasian College of Physicians on how they operate and are to be applied:

CFS is a descriptive term used to define a recognisable pattern of symptoms that cannot be attributed to any
alternative condition''.

Note the words ''cannot be attributed to any alternative condition''.


If you have lyme symptoms that would fit the diagnostic criteria of CFS, then these symptoms are attributed to lyme . No need to consider CFS. If you got a CFS diagnosis before you received a lyme diagnosis, then you were misdiagnosed with CFS.

 

[floydguy]

If you have lyme symptoms that would fit the diagnostic criteria of CFS, then these symptoms are attributed to lyme . No need to consider CFS. If you got a CFS diagnosis before you received a lyme diagnosis, then you were misdiagnosed with CFS.

Yes, but there is no such thing as Chronic Lyme. And I am not a Gulf War Vet. See the problem? The real issue as been said again and again is that there is no place to go if you have a condition that can't be figured out in 5 minute sessions. I am afraid there is an extreme shortage of doctors who have the ability and capabilities to be great diagnosticians.

 

[insearchof]

Hi Floydguy

I am probably missing the point you are making with respect to lyme. Lyme disease is acknowledged. Are you saying that the extent of the illness associated with lyme is controversial?

If so, think I understand your point. As you are not a Gulf War Vet and the chronicity of your illness is not recognised, where does it leave you when the average consult is 5minutes and there is a shortage of doctors providing thorough work up and diagnostic services.

I hear and understand you. It is definitely a BIG problem.

Irrespective of whether you agree with the position taken in this thread on other matters - this is one that I think both ME and CFS camps can campaign on.

Strangely though, whilst CFS groups acknowledge the need for better diagnostic attempts and push the CCC CFS criteria - they have missed the point about the need for better medical evaluations period.

This has to be addressed.

As patients, I also think we have to be more vocal and pro active in rejected shoddy medical services and insisting on thorough work ups.

We need patient advocacy services -that will intervene in the doctor patient relationship to assist patients getting this, and build up a network of strong diagnostic physicians who will look after ME and CFS patients.

 

[floydguy]

Hi Floydguy

I am probably missing the point you are making with respect to lyme. Lyme disease is acknowledged. Are you saying that the extent of the illness associated with lyme is controversial?

If so, think I understand your point. As you are not a Gulf War Vet and the chronicity of your illness is not recognised, where does it leave you when the average consult is 5minutes and there is a shortage of doctors providing thorough work up and diagnostic services.

I hear and understand you. It is definitely a BIG problem.

Irrespective of whether you agree with the position taken in this thread on other matters - this is one that I think both ME and CFS camps can campaign on.

Strangely though, whilst CFS groups acknowledge the need for better diagnostic attempts and push the CCC CFS criteria - they have missed the point about the need for better medical evaluations period.

This has to be addressed.

As patients, I also think we have to be more vocal and pro active in rejected shoddy medical services and insisting on thorough work ups.

We need patient advocacy services -that will intervene in the doctor patient relationship to assist patients getting this, and build up a network of strong diagnostic physicians who will look after ME and CFS patients.

Lyme Disease is certainly accepted but Chronic Lyme is not. Conventional medicine pretty firmly believes that 2 weeks of Doxy is all you need to recover from Lyme. Any more than that and it is not Lyme Disease. It would seem that ticks are probably carrying other bacteria and viruses that are not being addressed by the anti-biotics but conventional medicine is not acknowledging this.

After reading Hyde's stuff, which is great, I'd be very interested in his assessment. ME resonates with me a lot more than CFS as "fatigue" is not the defining factor for me. I have the abnormal SPECT scan, enteroviruses, low body temp, muscle fatiguability, etc, etc, etc. But a lot hasn't been tested particularly on the heart.

I am with you on the CCC. I really don't think it's much better. It continues to blur the lines. I really don't understand why so many people continue to advocate for it. I also agree about the work up. I would pay a lot of out pocket to get an adequate workup so I knew exactly where I stood. But I wouldn't do it unless I was confident that it was being done by someone like Hyde et al who knew what tests to run and how to interpret the results.

 

[rlc]

Hi Floydguy, I appreciate that you said after a very brief review, but what Dr Mirza is explaining is certainly not conditions just linked with Idiopathic Fatigue, the conditions that Dr Mirza explains that are misdiagnosed as CFS are very serious and have a vast array of other symptoms other than fatigue, and in the case of the likes of Hemochromatosis and Adrenal Insufficiency are often fatal if not detected and treated, even a simple B12 deficiency if not treated will often progress to Pernicious Anaemia and death if nothing is done about it! By a happy coincidence I have just finished writing out a detail account of Dr Mirzas tests with a lot more information which I will post next, I havent forgotten that I said to you that I was going to post information on things people can do to increase their chances of getting a correct diagnosis from their doctors. Sorry for the delay but life and health have got in the way, but I should be able to post it soon.

Regarding Gulf war syndrome, from what Ive read it shouldnt even be mentioned in the same sentence as CFS because it is a different condition to CFS and there appears to be a lot of proof that its been caused by the vaccinations and other toxic exposure and possible biological and radiation exposure that these solders received, and I would imagine if their getting the same kind of atrocious work up that CFS patients get from their doctors, then there is likely to be a large number of misdiagnoses in that group as well.

Again Lyme disease is Lyme disease and should never be called CFS, but for people who have had Lyme and been treated and not recovered, Id say that it is highly likely that there is some other medical condition that has been overlooked that is causing them to remain sick or to not be able to get rid of the Lyme infection. And I think it is reasonable to assume that this is going on in the case of the chronic EBV, CMV type infections.

I have put some information in my next post on how a lot of the conditions that Dr Mirza mentions have been shown to damage the immune system, which could explain why things like EBV infections which almost the entire worlds population gets and never have ongoing consequences for most people, become chronic problems in some people, I feel that for a lot of people the underlying cause is being missed allowing these kind of infections to do damage that they are incapable of doing in a healthy person.

Personally I think the number one thing that needs to be advocated for is that everybody with a CFS or ME diagnosis needs to be properly investigated so that they can get a correct diagnosis and have all other possibilities ruled out. A combination of Dr Mirza,s tests plus the tests mentioned by Dr Hyde in the Complexities of diagnosis would come very close to achieving this.

As far as research goes, until this is done and a great effort is made to make sure that all the patients in the research have the same illness, its just a total waste of time and money. If your researching any disease and you get together 100 people to test, but ten of them have a different illness, then the results will be corrupted and be completely useless. My feeling is that because there has never been a large effort in any of the CFS research to make sure that everyone has the same disease and instead they just use the woeful diagnostic criteria. This is the explanation of why after about 3000 different studies no conclusive evidence on the cause and effects of CFS has ever been found and people are just left scratching their heads wondering whats going on! And the only plan they ever seem to come up with is to do another study without sorting out whos got what illness. As I see it everybody has to go back to the beginning and make sure everybody has the correct diagnosis instead of relying on the woeful diagnostic criteria and the equally woeful doctors who are prepared to use them in the first place.

All the best