Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 14, 2011.
No of course not. I just said it was not a name change or revised CCC.
The Canadian Consensus Criteria were used as a starting point, but significant changes were made.
(See CCC definition of ME/CFS: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome:
Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
Yes rather a bold statement don't you think in the absence of testing?
Firestormm - Today, 01:28 AM
"Yes rather a bold statement don't you think in the absence of testing?"
No not at all. It is observable and based on common sense. These people aren't exactly radical mavericks, so to state specifically, we can be sure it is valid.
Yesterday 02:52 PM
Michael wrote: "Jill your ridiculous"
If people want to resort to name calling, I'm not going to worry about it, but for future reference:
1. While we honor passionate and informed discussion we will not tolerate rudeness, insulting posts, personal attacks or
purposeless inflammatory posts. Personal attacks include:
Attacking someone's character
Referring to members in a pejorative way
Hi Jill, welcome to the forum, glad to see you have found the rules and are prepared to remind people who should know a hell of a lot better how to behave themselves, what they are!!!
If Cort or any of the moderators are reading this, I would like to add that Im extremely disappointed at the way the rules of this forum are not being enforced, and that certain members are allowed to continually make rude comments and interrupt the flow of conversations, I have even been on the receiving end of this kind of behaviour from a moderator! This is having very unfortunate consequences, like Suzy Chapman (amongst others) who has worked tirelessly to help people by providing information that the DSM was being written in such a way that CFS could be changed to CSSD and helping people with information on how to write submissions, while all the other CFS orgs had been sitting on their hands doing nothing, has now left the forum because of the constant rudeness being directed at her by certain members.
Michael if you need to boost your ego by making rude comments to people, find some people in your private life to do it to who arent sick!! The last thing a sick person needs is to be on the receiving end of that kind of comment.
And as for a male treating a female that way, have you no manners!!!
Jill you are of course right the ICC criteria has nothing to do with a name change it is about separating the ME patients from the CFS group, because ME always has been a totally different illness, which the CDC and Wessely school has tried to hide by inventing CFS and giving it ever increasing and vaguer symptoms. Which several others and myself spent a lot of time trying to explain to people in this tread http://forums.phoenixrising.me/show...e-difference-between-ME-and-CFS-to-the-public
The ICC makes this quite clear when it says
Individuals meeting the International Consensus Criteria have myalgic
encephalomyelitis and should be removed from the Reeves empirical criteria and the
National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
It also makes it quite clear at what level people have been being given the wrong diagnosis because it was the consensus of this group to include this statement by Jason et el on the findings on the Reeves definition
only ten percent (10%) of patients identified as having CFS actually had ME.
As the NICE guidelines are just as useless as the Reeves ones, it means that out of the estimated 20 million people diagnosed with CFS in the world only 2 million have ME and the other 18 million have got the wrong diagnosis, because as Dr Hyde has found when he properly tests and examines his patients there is no other mystery disease, theres ME and a vast collection of other known and often very serious diseases that peoples doctors havent taken the time to diagnose properly and have instead dumped them in the CFS group. If anyone reading this is interested in the kinds of tests Dr Hyde does I have written them out here http://forums.phoenixrising.me/show...s-How-to-rule-out-all-other-possible-Diseases
You are also right that the term ME/CFS has not been a help and it certainly didnt forge the way for ME, ME has been a WHO recognised disease since 1969 and unfortunately the writers of the CCC chose to ignore this fact, all the ICC does it put these Doctors back in line with the WHO and turns the clock back to pre 1988 before the CDC and wessely school started playing fast and loose with the truth. The term ME/CFS came about because as Dr Hyde points out the writers of the CCC made the mistake of thinking that ME and CFS where the same thing which they are not and never have been. It is certainly not the case as cort ascertains that The outbreaks continued on with Hyde stating in 2003 that he had reports of over sixty of them (but they no longer figured in the literature) people might have chosen to ignore this literature, but the literature on almost all of the outbreaks and research into ME always has been and still is easily available in the medical journals such as the Lancet and JAMA, some of it has been collected here http://forums.phoenixrising.me/show... ME Research Literature and other information for some reason the writers of the CCC either didnt do their research or choose to ignore it, and instead constantly referenced their own work never a good way to get a balanced scientific view and something Wesseley and co have also done a lot of. Which is a great shame because they ended up with a criteria that doesnt properly define ME or anything else, and is largely a collection of symptoms that could be caused by a vast number of different diseases. Theres a review of the CCC here http://www.hfme.org/canadianreview.htm
Thankfully the likes of Dr Carruthers are now correcting these mistakes in the ICC but its a shame its taken eight years.
The ICC is defiantly an improvement but it still has some weak points that will hopefully improve over time.
Its strong points are a return to the correct name ME putting it in line with WHO.
Stating that it is a neurological disease and affects the CNS so it is now in line with all the research going back decades.
Getting rid of the having to wait six months before diagnosis, which is the kind of insane thing that only the CDC could invent, and a lot of previous research showed that confining patients to bed long after the initial phase was the best chance of full recovery.
Getting rid of persistent fatigue as the defining symptom, fatigue has never been a defining symptom of ME.
Getting rid of the nonsensical phrase PEM as a defining symptom, because it has no way of being measured and is found in numerous conditions.
Getting rid of the vast collection of different symptoms that people could chose from which was bound to lead to misdiagnosis, and limiting it to primary symptoms, because as an example some ME patients do experience POTs but its also found in about forty other different conditions so its not something to base a diagnosis on.
Getting rid of the name ME/CFS which is as nonsensical as HIV/MS or Addisons/leprosy
But it does have some major weak points
The main one is it is not testable!!!! As the IMEA points out here http://www.imeassoc.com/Response__ME_ICC.html
If people compare it to the nightingale definition link http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
Dr Hyde lays out all the things that can be tested for that confirm diagnosis
Diffuse Brain Injury Observed on Brain SPECT
Testable Neuropsychological Changes
Testable Major Sleep Dysfunction
Testable Vascular & Cardiac Dysfunction
Testable Endocrine Dysfunction
Without having the testing thats needed to confirm diagnosis this then still leaves people in the dark as to whether they have the correct diagnosis!!! And although they spend a lot of time talking about measurable brain changes etc in the ICC they give no guidelines for testing for them. There are other illness that will give the same or very similar symptoms as those laid out in the ICC and without proper testing guidelines this leaves inexperienced and often unmotivated doctors guessing at the diagnosis.
It would be helpful if theyre not going to include testing, if they included a section on what other diseases to rule out, by this I mean the diseases that are similar and have to be ruled out before a diagnosis of ME is confirmed an example of this can be found here in relation to MS http://emedicine.medscape.com/article/1146199-differential
Instead all the ICC say is Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patients history, physical examination, and laboratory/biomarker testing as indicated.
From my experience and from what Ive heard from a lot of people the average doctor needs very detailed explanations on what to do because a lot of them are useless!!!!
Dr Hyde goes into more detail about ME having two different phases the onset and chronic phase as does all the old litrature, which I think they could of emphasised more in the ICC as its important that doctors are aware of this so they can make the diagnosis quickly!!!
Obviously the CDC and Wessely are not going to be rushing to embrace this criteria and putting their hands up and admitting that theyve been making up rubbish since 1988, but the thing that fills me with some hope for ME sufferers is that I see on the list of authors that the WPI and Dr Chia are involved, which means that the virologist Dr Ian Lipkin will know about this criteria because hes been involved with the WPI, if he uses it to select the patients for his investigations theres a far higher chance of there actually being a lot of ME patients selected then there would be using any of the other definitions, other then the Nightingale and the Ramsey definitions, and if he is aware of Dr Chias work on Enteroviruses and looks for them then there is a high chance that the cause will be found as there is decades of research implicating Enteroviruses in ME, including finding them in the blood, by muscle and stomach biopsy and in the brains of autopsied ME patients none of which has ever been properly refuted and which the CDC and Wessely have known about and swept under the carpet for decades. So hopefully a cause and a cure for ME arent too far away!! Unfortunately that still leaves the other 18 million people abandoned to suffer unless they can get properly investigated to find the cause of their illness.
Going back to the original premise of the tread ME changing, its not a case of ME changing its a case of the CDC and Wessely and Co making up fictitious symptom lists for their invented disease CFS and saying its the same as ME, the CCC muddling CFS and ME together as if there the same illness and because of this confusion you get as the ICC says
The problem with broadly inclusive criteria is that they do not select homogeneous sets of patients.
So all the research which has been done for a long time, except work done by the likes of Hyde, Dowsett and Richardson, is based on using broadly inclusive criteria, which has lead to research being done on a large number of patients with different illnesses and then everyone saying thats what ME is. Basically all that research has been a colossal waste of time and money!
If people look at Dr Hydes investigation of the Lake Tahoe epidemic that can be found in this article http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
Where he unlike the CDC actually examined the patients you can see that it was the same as the ME explained in the earlier literature it even started in school children as did other of the more recent epidemics like Lyndonville etc
In these two videos the patients and Dr Chenny describe what happened and you can see that it was a sudden onset illness starting with Flu like symptoms then progressing to a serious neurological disease from which a portion of patients never fully recovered
If this information is then compared to the symptoms in the original Holmes definition http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf which the CDC claimed was based on what happened at Lake Tahoe it then becomes extremely obvious that they have invented a disease that bears no resemblance to ME or what happened at Lake Tahoe, and since then the CDC and Wessely school have been continually expanding and making the symptoms vaguer and reducing the amount of testing that is required before a CFS diagnosis can be given, and then saying its a psychiatric illness which means that the insurance companies have saved billions because they dont pay out for psychiatric illness, and in a bizarre coincidence (not) it turns out that Wesseley and his cronies work for the same insurance companies. CFS has never been ME and its good to see that there are an ever growing number of doctors who are starting to recognise this fact!!! ME hasnt changed its been swept under the carpet since 1988 and a vast amount of nonsense has been written by the CDC and Wessely and researchers using the hopeless CFS criteria about it.
It is also worth noting when comparing the older literature to the ICC that the ICC is focusing only on the defining symptoms, this doesnt mean that someone with ME cant experience things like paralysis; they just havent included it because its not always present in all patients so therefore its not defining.
Also because in the past ME was a recognised illness they were a lot quicker at recognising an outbreak of it which is why youll notice that in a lot of the older literature that the symptoms being mentioned are those of the onset phase, e.g. paralysis, vomiting high temperatures etc these days doctors havent got a clue about ME so patients just get told they have Flu or a stomach bug and it often takes months for a doctor to even consider that there might be something else wrong. The ICC has side stepped the whole issue of onset and just focused on the symptoms of the chronic phase, but hopefully in time it will be revised to give more information on the onset phase as its important that doctors learn to quickly diagnose!
I hope the ICC will be the start of the turning of the tide and research will be done on patients who only have ME and then all these other issues can be resolved, Fingers crossed!!!!!
All the best
Originally Posted by Jill McLaughlin
ME/CFS makes no sense, diagnostically or even on the public/awareness front. No one knows what it means (as it has no established meaning anywhere).
Where do you get this information from and can you please back it up with a reference to this bold statement.
It has been used by many in authority about this illness. It has been used because the pathetic name of CFS never made sense and until a real name change was established, this a a lesser than two evils. What do you mean it didn't make sense? Everyone understood that it was a temporary name until the time that a permanent name change can be established. You make it sound like you are the only person who really know what true M.E. is and that the rest of us just have a fatiguing illness which is a waste basket and we are just M.E. want to bes. This attitude is tremendously irritating to myself and many others.
You, yourself admitted that the new ICC was a good move, yet you don't admit that it is a name change when it is explicitely stated that they are dropping the name CFS and adopting the name M.E. whether you like it or not. By telling me that it is not a name change is an insult to my intelligence, So I would not bring up the rules of insulting.
You have a great following on Facebook yet this is the first time that you deemed it necessary to comment on a post here not for our benefit or too help out but to simply criticize.
Please state your credentials that you have a deeper understanding of this illness that the esteemed people who authored the ICC. Do you have an MD? Are you a scientist? How many studies have you authored about this illness?
@Firestorm - "bold statement without testing"
Many illnesses are diagnosed based on a set of symptoms and if they don't have concrete biomarkers yet does not mean that three is no value to what they have authored. No matter what people are saying on the "other" forum.
The easiest thing to do is to criticize. Where does that get us? Do you think that we were better off before this ICC came out? Do you think that we were progressing in a fast and productive matter? No one wants to touch this disease and the ones who do just want to prove that it's all in our head, So, a paper comes out to give us some legitimacy to an organic disease and all people are doing is criticizing it.
Hi rlc, one of the problems on PR is that there are not enough moderators. This site has grown, but the number of moderators hasn't. It would be good if more people would consider becoming moderators.
If you believe the Reeves\Oxford etc criteria, based on a 5% prevalence you get a figure of 345,000,000 with CFS, or roughly the population of the USA. If 10% have ME that is 34,500,000. The 17,000,000 often quoted for ME or using early CFS definitions is just that - old. It has doubled or so, perhaps - all the figures are suspect. There is not enough research based on rigorous identification of patients to be certain about any prevalence figures.
If you go with a 2% prevalence, you get 138,000,000 for CFS and 13,800,000 for Me. This problem is bigger than what many are saying.
Personally I still like to use 0.4% for ME (an old Fukuda figure I think), which gives me a figure of 27,600,000 for ME. Whatever the real figure is, its too many, and is probably growing.
Hi alex3619, thank you for your reply, I do appreciate that a lack of moderators is a problem, maybe it would help if something is written in the next PR news letter reminding people what the standards of behaviour are and that they will be enforced. Personally I just wish no matter how worked up people are feeling, that they would just stop for a while a remember to be compassionate as everybody here is very sick, and upsetting people isnt going to help them through their pain, but I guess thats just my rose tinted view on how people should behave.
Regarding the figures on ME totally agree that the numbers on who has ME and whos in the CFS group are out of date and expanding rapidly all the time thanks to the ridiculous Reeves and Nice criteria so nobody really has exact figures. I was just trying to emphasize the point that ME is not CFS and this is what the ICC is saying and that ME has always been a relatively rare disease in comparison to the vast numbers that are being given CFS diagnoses. Personally Im always amazed that all round the world doctors dont have to hand in the numbers of people they diagnoses with different diseases every few months so that people can actually keep track of the numbers of all the different diseases, but then a lot of things the medical community do are totally lacking in common sense. Maybe when they find the infectious agent for ME then it will become a notifiable disease and we might start getting some accurate numbers
All the best Alex
If this thread is going to become yet another one about the ICCME then could someone link it to the others? The points being made are repetitious. Thanks.
If the US include 'ME' alongside 'CFS' as has happened in the UK for quite some time now, without ensuring that the 'ME' as accorded distinct disease status by the WHO is not defined separately - then you are doing it an injustice.
Whatever Myalgic Encephalomyelitis is defined as being there needs to be testing done to confirm a diagnosis. Without acceptance by the authorities of 'ME' as being different, then in the US (as in the UK) it will become amalgamated with 'CFS' - a hybrid term if you like.
We also now have in the UK the term 'Myalgic Encephalopathy' - another 'ME' if you will. I think you need (in the US) to try and understand why Myalgic Encephalomyelitis was not accepted in its' entirety as a distinct disease. And I don't mean because of the 'Wessely school' either for that matter.
If you believe that 'CFS' = 'Myalgic Encephalomyelitis' and that this 'ME' in some way legitimises 'CFS' then I don't think you are any different that the authorities in the UK, who believe the three terms are interchangeable.
The problem lies with WHO. They never defined what 'Benign Myalgic Encephalomyelitis' was. It appears as a nomenclature only. One might just as well reintroduce Post-viral fatigue into the melting pot (again as occurs here in the UK).
Nielk - your reference to the 'other forum' being mecfsforums is, again, an injustice. The need for testing in order to try and do what previous criteria have been unable (e.g. gain acceptance and validity and lead to actual treatments for those included), is not only a discussion confined to that one place, as well you know. Again, I would refer others and yourself to the relevant threads on this forum and elsewhere.
I think that everyone would agree that there is a lack in the ICC. Had they added the required testing to get a definitive diagnosis, it would be a gold mine. But, before criticizing this fact on public forums, I would ask the authors directly why this was not done. Like I said before, criticizing is the easiest thing to do. Maybe, they didn't publish it because there are no scientific tests at this point to categorically diagnose a patient wit M.E.?
I know that the British believe in Dr. Hydes methods of testing as being the absolute truth. But, did you ever think why it has not been accepted by the international experts?
I think that there is a tremendous cultural divide between the US people and the UK people.
I get the feeling from many posts by the UK people that they feel they own the name M.E. and that we are trying to hijack your disease. Yet, this consensus was an international one. If they all felt that Dr. Hyde's method has foolproof validity, why didn't they just adopt his criteria with his set of tests for diagnosis?
I don't know the answer to this question. Maybe one of the authors of the paper can enlighten us. Maybe they feel that at this date there are NO definitive tests that they can ALL agree with. Don't forget, what they said was that there was 100% approval for this consensus. Maybe they couldn't agree on the testing method and instead of not publishing anything, they decided to publish the points that they did all agree with.
Everyone does agree that there are some merits to the new criteria which had a starting point of taking the CCC and adding and improving on it based on new scientific findings.
There is just one general point I would like to bring up. We all wonder why the medical establishment doesn't do more for us, why we don't get fundings and why we are being ignored. To be very honest with you, if I were a medical doctor or scientist, I would not touch this disease with a ten foot pole.
These 23 international experts who have many many years dealing and studying this illness took of their time voluntarily with no financial compensation and worked very hard to put this paper together FOR US. Yet, all they are going to hear is critiques from the patient population.
I am not saying that we don't have a right to voice our opinions but, if they are mostly going to be negative and critical, why waste their time?
What happened to your rose colored glasses when it comes time to look at this paper?
Why can't we (the US and the UK) come together and play nice? After all we are all sick and suffering.
Ric, how about this for manners,...You go on a long tirate about me, just because I thought Jill was ridiculous in her comments. Jill has a long history of putting down many people besides her ridiculous comments on her short stint with PH. If anyone, I am probably one of the most sensitive to how sick members can be on this forum...Many many of them I speak with privately on a weekly basis to offer support.
You have presented here a version of events similar (though much more tempered) to the one I earlier found to be inaccurate and unfair.
You applaud the likes of Dr Carruthers for defiantly, if belatedly, correcting the ME/CFS mistake of thinking made by the writers of the CCC. But you don't mention that Dr. Carruthers co-wrote both documents (with Marjorie van de Sande) or that three other medical experts also served on both panels. Would that be to admit that the CFS in ME/CFS has been dropped and ME updated in the ICC, even though some people said it would never happen that way? Would that be to acknowledge something of the transition that Cort describes in his article?
Your version of events would seem to make some people 100% right and many more 100% wrong. The fact that it also involves positioning some authors defiantly against themselves might also make it seem...a little ridiculous.
Do applaud the ICC outcome to the extent that you choose, but kindly acknowledge that the way this ME definition has come about has taken you and others by surprise.
ME Core Problem
Hey Cort, great job on this article. Just got around to reading this thread and was surprised I've missed it for so long (well, maybe not too surprised ). Anyway, I was wondering how much credence you give to Richvank's hypothesis that this "core" problem is likely a methylation cycle block (I think I got that right).
The Acronym CFS a Historic Footnote ?
Thanks Nielk, for giving voice to some of the very same concerns Ive also had. Thanks also for your other posts on this thread. I also could not make sense of many of the things you were responding to. Whatever these comments were supposed to mean or what their intended purpose was, they for most part struck me as being irrelevant to this very encouraging development. CFS being dropped from the lexicon of this terribly debilitating illness? How long have we been waiting for this? Thanks to everybody who contributed to making this happen!
So we are to debate the ICCME here as well then? Okey dokey.
I disagree - nicely. Criticizing is the hardest thing to do compared to accepting the ICCME with open arms and saying 'Yep I have that!'.
I have been diagnosed with Myalgic Encephalomyelitis - after being diagnosed with viral encephalitis - then I was diagnosed with US 'CFS' and then (from memory), UK 'CFS' and then UK Myalgic Encephalomyelitis, and then, and then, and most recently Myalgic Encephalopathy.
Take your pick. Pick you doctor. Whatever his/her preference. The names you see are interchangeable and I am afraid 'ME' has been defined before - when I was first diagnosed for instance - and yet was merged with 'CFS'.
Personally, I couldn't give a fig what the name is called. But it would be nice to have a name that actually reflected my illness and that would mean something which could be tested for.
Myalgic Encephalomyelitis is muscle pain and spinal/brain inflammation - prove it. In the UK it was decided there was no proof to justify the name.
It is 'recognised' for sure. But it is effectively the SAME THING as CFS. And I am really sorry but the ICCME does nothing (in the absence of tests) do anything to prove there is a fundamental difference.
Yes it might do one day. But the research that was attached to the criteria did not suggest anything new. And the authors have to convince not only researchers of the future but also medical authorities to adopt the criteria and to use them.
If the authorities do not recognise the criteria (which are telling them to drop 'CFS' and that 'ME' is a distinct disease - when they are saying it is not) then researchers will not use it. Researchers need to validate their studies with approved criteria.
But Nielk they have published the criteria. And apparently there are tests that some people believe do point to 'inflammation' for example that are actually less costly that special scans.
Again, unless something new has been proven to identify a cohort of patients as having something noticeably different than another cohort, and which supports the disease 'benign myalgic encephalomyelitis' then what is the point?
How will it become accepted. Take this pasta thing - PENE. I am not being flippant I assure you - am just tired. Prove to me that PENE is distinct from PEM. In fact prove to me that you can test for PEM let alone test for PENE.
It cannot be enough - not if you want these criteria to be accepted and to support 'ME' as a distinct disease - to use great sounding words. This has all been done before but in the absence of proof using RCT and on significant numbers of patients - myalgic encephalomyelits became the same as chronic fatigue syndrome.
The CFS/ME effectively means CFS or ME - use whichever term you like - they mean the same thing.
OK I will now reveal more of my ignorance. Who? Lol. You mean the Hummingbird fella - right? Well he might be the 'bees-knees' among some patients and even professionals I suppose but I don't think he 'cuts the mustard' either with the establishment.
Probably a reasonable assumption on your part I agree. Though speaking personally, I couldn't give a fig - as I said - about this debate. 'Been there done that' I am afraid.
When this consensus - well among those who published it at any rate - was realised I really thought something had changed. I was really hopeful - you know?
But I can't honestly see what has changed. I mean I 'get' why some patients might 'like' this one - but I do wonder if when testing is introduced - whether they have considered what might happen if they did not 'qualify'?
Also, if these criteria were to be used by practising physicians independently of their respective authority, then similarly, what would they feel if they did not meet the criteria when applied in a clinical setting?
They didn't because it didn't. Similarly, the Ramsay definition was not employed as a definitive criteria either - not at least by the authorities.
You know, I still to this day cannot understand why it hasn't been possible to prove brain and/or spinal cord inflammation. I just do not 'get' it.
But you have to be able to demonstrate this in order to justify and validate the encephalomyelitis (well a part of it - but the main part). Some will tell you they tried and failed but I still hear from patients who have been subjected to scans and whose brains have been shown to have abnormalities - I guess then these don't qualify, huh?
And they probably don't. I mean what does qualify for 'inflammation' on the basis of that name? Maybe the name is wrong? Ever stopped to thing about that? Maybe the WHO need to update their profile. I mean it would be a help if the WHO actually defined or even described the disease that they categorise - wouldn't it?
Yep you are probably right. They all did reach a consensus. Did you know that here in the jolly old UK despite the names being generally thought of as interchangeable - one thing the authorities do also believe is that the origin of the symptoms is likely to be neurological?
So again, I ask - what difference will these criteria make? I mean maybe they will mean more in the US if your authorities do not make reference to neurological cause for symptoms.
Though that CDC page that has been featured recently - would seem to suggest (spuriously though I think) that 'ME' is not 'CFS' but then it also undermines 'CFS' doesn't it? Still it is only a few sentences on a page of general stuff recently updated, that appears to have been around for quite some time.
Maybe in the US they will adopt the ICCME and they will use it to support their claim that 'ME' is a distinct disease. Then they have to deal with all those people who were diagnosed with 'CFS' that might in fact have 'ME'.
Same goes here in the UK if - finally - the two names were accepted as being distinctly different. Then of course you also have Myalgic Encephalopathy....
The CCC was ME/CFS. This 'new' criteria is deemed sufficient to recognise and separate Myalgic Encephalomyelitis as a distinct disease.
Based on patient reaction to this criteria I would suggest that all 'CFS' diagnosed patients will think themselves as qualifying for 'ME'.
That cannot be right can it? A patient should not be able to decide for his or herself that any disease 'fits' what they thing they might be suffering from.
It has to be objective and it has to be objectively applied. And that - I would suggest - can only be done with some form of testing, or in the interim the application of these criteria by way of questionnaire.
And believe me, I have 'issues' with questionnaires being used to determine a patient's diagnosis.
With all the stuff hitting our papers and now drifting across the Atlantic with Carl Zimmer - I should think those in the 'community' doing the 'harassment' are doing an even better job of discouraging such professionals.
Then again, as usual, the media have to take more than an equal share of any 'blame'. But I take your point. Still look at 'XMRV' I mean you can't say that didn't shake things up and get interest as well as funding for studies!
You know one of the contributors to this criteria happens to be a medical advisor to two ME Charities here in the UK. To date I have heard nothing from said charities about this criteria.
I can only assume that they - like me - are waiting to see what comes with the full publication. Critiquing is part and parcel of the job they undertake. This is a controversial field - they know that.
I have also heard little - if anything - from any other of the more vocal advocate organisations about this criteria. Though I have read some releases - CFIDS for example have said it is too soon to call for the removal of 'CFS' and the Canadian advocacy organisation have said they need to discuss it amongst themselves first.
There is a high-brow meeting soon I understand with the US government health agency (sorry am flagging now), to consider adding 'ME' to 'CFS'. In which case will this recognise the two as one and the same thing? Or will they accept the ICCME and do away with 'CFS' altogether?
I am not a betting man, but if I had to guess I would say that the precedent has been set by the UK and you will see 'ME' added to 'CFS' and the two accepted as interchangeable terms.
As I said. I have - as have many before be - come from being diagnosed with myalgic encephalomyelitis to seeing this diagnosis merged with chronic fatigue syndrome - and now you are suggesting that these criteria are enough for the situation to be reversed?
It was an international criteria and you will find I suspect many patients over here with those rose-tinted-spectacles you mention (though I think you do them and yourself a disservice with the terminology).
You will also find a number of patients whose scepticism can perhaps be understood given their history and experience. These criteria have to be different and they have to be supported by evidence.
Even if the whole 'community' united in support of these criteria - without evidence without testing - I am afraid it will achieve little more than previous attempts.
I would suggest, with much respect to one and all, that myalgic encephalomyelitis is simply the wrong name and little if any research recently has proven that the name justifies the disease suffered by patients - some, few, most, or many - already diagnosed with 'CFS' or 'CFS/ME'.
At least not in the eyes of the establishment. And anyway, if the establishment already accepts the name - what other treatments will these criteria potentially lead to? What difference will these criteria and the adoption of the name mean?
I am not suggesting they won't mean something - I am asking as a point for discussion. Will 'ME' mean in reality a greater focus of biomedical research and less focus on psychological treatment? Do you not think this is already happening regardless of any name change?
How many patients with 'CFS' do you think believe themselves to have 'ME' based on these criteria alone? In the UK there are some 250,000 patients with 'CFS/ME' - the figures are lose in the extreme as they are in the US as are all estimates.
But if you showed patients these criteria with that sentence which says the time has come to drop the name 'CFS' - how many patients do you think would say 'Yep I have that alright!'?
Sorry for the long reply. I tried to keep it relevant to Cort's thread.
Professor Hooper has also made some bold statements...
About the impact of the ICC (July 30, 2011):
The sound biomedical evidence upon which those criteria are based completely vitiates the belief of Wessely and colleagues about the psychiatric nature of ME...
About diagnosing patients using the ICC (July 30, 2011):
In his letter to the BMJ (7) Peter White et al dismiss key symptomatology of ME including ataxia, palpitations with cardiac arrhythmias and loss of thermostatic stability as being of dubious validity, yet those symptoms are specifically required for a diagnosis of ME as stipulated by 26 international experts from 13 countries who between them have 400 years experience of diagnosing over 50,000 patients....
Furthermore, in his letter to the BMJ Peter White complains that the criteria which define people with classic ME are too burdensome for doctors to use.
When did the careful assessment of sick people stop being part of the practice of medicine, especially when the disorder in question is known to be a complex multi-system disorder?
Testable, testable, testable - this is such an interesting issue. I am going to flip this on its head and say by definition the ICC and ME is NOT testable yet - at least in the eyes of the research world. Why? Because no studies have been done on ME yet...Not one study has examined brain injury, endocrine, vascular problems etc in ME! They've all been done on CFS...every laboratory test that is supposed to distinguish ME (from CFS no less) has been done on Fukuda defined CFS patients - but that's another story.
You can guess what abnormalities are going to show up in ME by using Hyde's personal experience testing the patients he believes are ME patients - but he has a different definition than the ICC; for one thing he doesn't allow gradual onset in his ME definition.
You won't be able to say what is in ME definitively until researchers round ME patients up and start testing them. Then they'll be able to validate those findings or not and say what ME is.
The ICC couldn't state what to test for in ME because they were in a catch-22; since all the studies have been on CFS there's nothing they can point to in the study literature and say - this is ME.....and that's what they needed to do given what they are trying to accomplish. Dr. Hyde can simply use his personal evidence - which is great - that gives the ME researchers an idea what to look for - but researchers as a group never rrely on anecdotal evidence......
(Note by the way- how little testable Hydes definition is - the only CNS test he quantifies is SPECT, he never says what kinds of PET or EEG scan results are found. Nor does he say what kind of vascular dysfunction...in order for ME to be testable patients are going to have to show certain kinds of PET scan results, etc. just as they do with SPECT scans.)
I truly beleive Hydes description of ME..all of whats mentioned as it describes what Ive experienced...and totally right on researchers wanting testable evidence
However I think there is conflicting views on what gradual onset really is. ME really has no gradual onset.. its always acute/sudden..however the severity of symptoms can vary greatly from that point..some get knocked off their socks day 1 and some take years for symptoms to increase in severity. But PEM and muscle weakness with exertion is almost always common from day 1, in my personal experience and others Ive spoke with.
There are some things that the scientific community is not ready to test for yet. For example, Dr. Derek Enlander gave a speech in London last week and showed slides of the autopsy of one of his deceased patients. It showed signs of HHV6 in part of the brain and the heart. How is one to test for this while a person is still alive?
There are a number of diseases that don't have definite tests for diagnosis. They are diagnosed based on exclusion and symptoms displayed. Some examples are , Parkinson's, Alzheimer's, Lupus, Meniere's disease, Fibromyalgia, Gulf War Syndrome ..etc.
In a perfect world, we would have no disease. In a better world, illnesses would have definite diagnostic test with working treatments. Unfortunately, things are not so simple especially with a disease that involve so many parts of the body.
If we are to advance in breaking the mystery of this illness, we need a consensus of the criteria of the illness so that it can be studied in a homogeneous manner.
This is what the ICC brings to the table.
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