Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.
Post removed by Suzy Chapman
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Yes, of course the quotation is in refernce to the older documents. (It would have to be, given that the page was last updated in May.) I was pointing out that Marjorie van de Sande (coeditor) is referred to there as the Director of Education for the National ME/FM Action Network.
That fact doesn't answer your question about stakeholder input and consultation. But I had thought it might help.
Maybe you should reread the cognitive impairment section
Don't need the flu-like symptoms if you can meet the requirement from the others in that category.
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
4. Genitourinary: e.g. urinary urgency or frequency, nocturia
5. Sensitivities to food, medications, odours or chemicals
Seems to be fairly common for people with ME to evolve out of the infectious symptom phase (#1). I haven't had #1 (but does recur with flares) for about 8 years now, but very positive with 2,3,4, and mild with 5. So, I don't need #1 to meet the criteria for that category anyhow.
I'm glad to see the 6 month waiting period dropped and PEM/PENE clarified. Everyone agree's that PENE is the cardinal symptom due mostly to it's exclusivity to this disease. And even though it is our most common symptom, it's not constant through all phases of the disease for everyone with ME. I didn't have it for 10 years in. I think it would be good to somehow allow for this variable if it can be done without compromising this defining symptom (ie, recurrent or chronic, etc).
I currently meet this new criteria 100% for the diagnosis of ME. Same was true with the CCC.
PENE is not exclusive to ME. There exists an entire class of neuro-immunological diseases that produce the same symptom.
Because these are criteria, rather than a definition that includes pathology, there will again be patients that meet these criteria without actually having ME. Only, this time around they will not be psychiatric patients.
I believe that "delayed PENE" is what's exclusive to this disease. Do you know of others?
Really? I didn't know that. What are they? Can you give us some examples?
But even so, PENE is not the only symptom listed. It's the full spectrum of symptoms that describes the disease. And it's not as though ME/CFS is the only disease that's diagnosed without a biomarker: there are many. Alzheimer's, lupus, and Parkinson's come to mind. And, yes, I'm sure that because there is no lab test to diagnose them, sometimes people are misdiagnosed, but having a good case definition does allow doctors to accurately diagnose them much of the time.
Well, they do say that they are working on Physicians' Guidelines which will include treatment protocols, and treatment guidelines should help patients. But more important than that, this will give researchers who want to find biomarkers a legitimate set of criteria they can use and cite for their patient cohort. It will also give researchers who may be less familiar with ME/CFS (retrovirologists, for example) a much clearer set of criteria to use in patient selection. And I think that good ME/CFS researchers, like the members of IACFS/ME, will welcome it.
Of course not. The psychiatrists aren't going to roll over and say "oops, we were wrong" just because an international panel of experts refute what they say. And the prejudice they've created in the medical community won't go away magically either. But there are a lot of good doctors out there who would like to help their patients, who have been lacking good information and don't have time to do extensive research, who will probably welcome this.
I'm not sure whom you believe to "count the most." But the thing which will convince the medical community that we're not all nutters is good, solid research. Especially if that research results in lab tests they can use. And better-defined patient cohorts will lead to better research.
Of course, it has to be accepted as a legitimate case definition first. The caliber of the authors will help. It won't be easy to persuade the CDC to abandon their own case definition in favor of someone else's, but with pressure from the CFSAC, the IACFS/ME, and the research and patient communities, perhaps it can be done. The CDC carries a lot of weight in the medical community around the world. And the fact that this was an international collaboration will help, too.
But the first step had to be writing the new criteria, and so now we have that first step.
I don't expect overnight miracles, but I'm happy to celebrate the small victories and milestones along the way to the goal. I see this as one of them.:victory:
:Sign Good one:
Is there anything in there about irritability, or sensitivity to stress? Sorry, I've only scanned the paper and haven't had time to check that out for myself...I hope that doesn't make me a bad person...:innocent1:
Seriously, though, I'm very disappointed to see there has been some fractiousness on this thread, when I would have hoped to see us gathering in celebration of what looks like a big step forward and the beginnings of something I would hope we can unite behind. I will look back through the thread to try to see where those fractious comments originated.
As regards the ICC definition, I too am confused as to how this relates to Jason's work, expected in September. I hope we have clarification on that soon.
And I'm sorry to mention another negative point at such an exciting time, but if I understand correctly, Guido has represented the perspective that I would expect HFME advocates to have with regards to the ICC - and please forgive me if I'm wrong, but I'm not sure whether the ICC settles what sometimes seems to me like an old dispute over the ownership of the name of "ME". I have the sense that unless a compromise can be reached which is satisfying to both HFME and the ICC authors, we will still be fighting each other instead of fighting those who coin terms like "CFS" and "CF"...though whether such a compromise is possible, I really don't know.
First off Nielk - you don't know me. So back off.
You are all cock-da-hoop about this but have you really read it and thought it through?
I live in the UK now and have done for over 10 years. This is yet another set of criteria defining an illness - my illness - that has been defined too many times by the wrong people.
Does this criteria replace the Canadian Consensus that some of them advanced and worked on? Do you recall that the Canadian Consensus was being touted as the 'best thing since sliced bread' only - what - a couple of days ago?
Who are these people? When did they come together? Why was this rushed out? How on earth do they expect Myalgic Encephalomyelitis to become accepted when this 'merry-go-round' has been revolving for longer than I care to remember and very little has actually changed?
Are you suggesting that anything which is touted as being of benefit should not be treated with scepticism? Should not be challenged? Should be applauded without fear of it falling apart under professional scrutiny?
Ok benefit of the doubt and you weren't to know. But I have better expressed the concerns I have about this 'International' Consensus on other forums I frequent more often.
Bottom line though is that this consensus does nothing for me as a patient of 12 years. It is another 'hope' - I could say 'great white hope' - but I won't because it would be 'nice' to think it works but I am not a 'believer' in the sense that it will without scrutiny.
It won't. There is nothing I can see in this document that will persuade the ones who need persuading - here in the UK - to change their position. NICE will say something like 'we recognise myalgic encephalomyelitis' as a chronic condition that is neurological in origin and have done for X number of years.
NICE recognise ME1/ME2 and CFS as the SAME THING. And in the absence (even in the presence) of whatever it takes to do whatever it is that people think is necessary to separate the CFS from the Encephalomyelitis they will not change their position.
There is no specific evidence to suggest in the minds of the 'establishment' that Encephalomyelitis is any different to CFS. And another set of non-authorised criteria that patients love - is not going to change their stance.
I actually thought when this was announced that 'International Consensus' meant - well I am rather embarrassed now to admit - but a consensus among the authorities. Wrong!
Thank you that's always good to know. I don't presume anything Nielk. I am a sceptic. I wasn't before this illness but I sure as hell am after all this time. I used to 'believe' in the medical profession and in medical research but experience has taught me to question everything.
Acceptance without challenge is stupid and I am afraid I will not be waving this document at my doctors and whooping about it. It carries no weight with them - do you not see that? Is it so different where you live? I thought it was worse in the US. Maybe you haven't been on this merry-go-round with the labelling before.
This is not an advance by the 'medical community'. Some are practising medical doctors, some are scientists - and Dr Mikovits (I am sorry) but here in the UK having her name on this document and being associated with 'XMRV' or whatever - is not going to persuade those that need persuading (if persuading is the objective of this document) to change 'back' to Myalgic Encephalomyelitis or recognise it as being different to 'CFS'.
You acknowledge there are or might be 'problems'. Here we go again. So this is version 1. When is version 2? The Canadian Criteria have been 'improved' and Jason - where is Jason on this by the way - is busy 'improving' his own criteria by the looks of it.
You know I wouldn't mind so much if the criteria changed when actual research proved something that changed or improved my chances of actual treatment and was accepted by the 'powers that be' - you know like the research that proved Multiple Sclerosis had a physical manifestation.
But no - and as I said previously - these criteria will be used by a handful of doctors outside of the establishment protocol and will cause more confusion and anguish and pain for patients.
Researchers - like Dr Mikovits - might use them but even she was happy to tout the fact that she had used the Canadian Consensus in the auspicious 'Science' paper. So why has she felt the need for a change? And why now?
I am very pleased that you feel that way Nielk. I would suggest you scrutinise the document and perhaps consider the wider picture a little - like how even if accepted such a criteria might even be implemented - but up to you of course.
Like you said everyone is free to express their opinion. And if you want to go through this document point by point then I am more than happy to on this thread or any other.
There are some good sound-bites in this work. And yes it is 'good' to see people working together - always. I just find it staggering that this appears out of the blue when the Canadian Consensus was the 'bees-knees' - according to some - only last week.
Have you compared the two? Or is the fact that 'CFS' has been dropped from the title sufficient justification for your wholesale support? Are you one of those that thinks there really are 'fakers' out there? People who have been wrongly diagnosed? Who should not be associated with the same illness as yourself and will not be if these criteria were to be employed?
p.s. here is one itty bitty silly thing from the ICC. Fingernails. Now what the hell is that all about? And what does it do to this document to make it more likely to be accepted by any authority on the planet?
This is the version to print out and share to your physicians and consultants.
http://www.hetalternatief.org/?ME Carruthers 2011.pdf
This as I see from comments on this thread will not be an adequate answer and many questions remain, I agree. All I was trying to point out is that it is a move in the right direction.
I have read the full version a few times and I have been ill for 9 years too with many abuses from the ignorant medical community. It is for that exact reason why I am hopeful with this positive paper.(positive in my mind and also in the mind of others who are up on all the news of this illness).
How is all this going to play out? I have no idea but, what do you feel the reason is that they came out with this paper? whose benefit did they have in mind?
I don't think that anyone on this forum has the inside scoop why this was done now and why.
One would have to contact some of the members who co-signed this paper to get real answers.
Did you think about the fact that all these people put their names out there for what purpose? To get more heartache from the patients they are trying to protect?
I have no idea if government health agencies will accept this paper but, I am sure that they thought about this when they planned this out.
I'm sorry we don't see eye to eye as to this development.
Anyone is welcome to express their opinions and I don't want to put anyone's opinions down. If it sounded like it, I am sorry.
Neilk. I found this ICC Short Version earlier: http://www.meassociation.org.uk/wp-content/uploads/2011/07/ICC-short-version.pdf Am not sure if that is the same as the one you posted above - as the link didn't work for me.
Btw I have not read it yet
I believe this is the full text (http://www.meassociation.org.uk/?p=7173).
I have that thanks. The short version is useful though in its' own way.
Just to clarify it is this Journal that published it right? http://en.wikipedia.org/wiki/Journal_of_Internal_Medicine A Scandinavian medical journal.
I am confused by reports that this is a 'first draft'. Has anyone heard similar? If so I am wanting to ask how it was accepted for publication. I suspect that it isn't a draft that it is complete - with a physicians guide to follow - but wanted to check.
Am off the review the research that has been flagged as supporting the criteria. Will probably take a wee while. Though I shall chip in to any debate over the actual criteria themselves - if I may - as this thread progresses.
One thing I wouldn't mind some opinion on at this point is the opening statement. I quote not in full but as an extract:
'The label chronic fatigue syndrome (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process.
In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term myalgic encephalomyelitis(ME) because it indicates an underlying pathophysiology...'
Now this suggests to me that they are proposing 'CFS' is dropped in favour of Myalgic Encephalomyelitis [period] and that these new criteria will distinguish those with Major Depressive Disorder (presumably this equates with Clinical Depression here in the UK).
1. So the assumption is that by removing this source of 'contamination' from the cohort of patients, ME will become better defined and... what?
2. Are these criteria capable of achieving this aim on their own and as they stand?
3. Is it not possible to have MDD and have Myalgic Encephalomyelitis? At the point of diagnosis and at times throughout one's journey?
As a patient - i.e. a layperson - I have always found this particular debate to be a 'red herring' but as ever I am willing to learn and do retain something of an open-mind even today
Gods one day my brain will work. I forgot: has this response been posted? Anglia ME Action: http://www.angliameaction.org.uk/docs/new-international.pdf I think it is the first 'official' response from an advocacy organisation though of course I might be wrong.
It does though - I think - bring my point home about the 'merry-go-round'. Rather than focus on the criteria themselves he seems to favour 'dissing' the psycho-lobby.
Well, my placement in this is still weak:
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat (only had when over did it, lasted for a year, no longer have, and was mild at that), sinusitis (never had), cervical and/or axillary lymph nodes may enlarge or be tender on palpitation (never had, unless it was in my torso- I have read of someone with swollen nodes in their torso, but not in neck.)
2. Susceptibility to viral infections with prolonged recovery periods (nope, never had. Now, I did go through period where I had no infections, for five years.)
3. Gastro-intestinal tract: e.g. nausea (Only when I push through the fatigue, headache, hot / cold cycles), abdominal pain (nahh), bloating (Yeah, but doesn't everyone at some point, especially women?), irritable bowel syndrome (used to, not any more)
4. Genitourinary: e.g. urinary urgency or frequency, nocturia (nope, never)
5. Sensitivities to food, medications, odours or chemicals (only caffeine, which I don't think is particular to this disease. As far as I know, no sensitivities to other foods, odors or chemicals.)
But, I have PENE. I have memory problems. I even have some not on the list, or I had some not on the list: easy bruising and vertigo.
I have slowed thought, cognitive overload, short-term memory loss, difficulty remembering what I wanted to say, headaches when I push through fatigue, pain in my lower legs every night and occasionally FM pain in hand and back.
I have insomnia and awakening earlier sometimes. (depends on how medicated I am)
I have unrefreshed sleep. Got sensitivity to light and sound. Got the muscle weakness. Twitching, but much less than I used to.
You know, I think one reason I don't have as many of these symptoms is not only treatment but also I don't do as much. If I was still trying to work as much as I used to, I bet I would have many more of the symptoms. Because the symptoms increase with exertion.
Now, inability to tolerate an upright position. Put a big check mark next to that one for me. Add laboured breathing, loss of thermostatic stability, sweating episodes, and intolerance of extreme temperatures. (walking around with sweater during summer because might go in store or restaurant with air conditioner too high for me.)
And, most of the moons in my fingernails have disappeared. I never knew that was part of it. But when I went to the FFC, the doc there looked at my fingernails. He didn't say anything about it.
It didn't say, but in the last week, I have determined I have sjorgen's. I have stinging tears. And main reason for that is dry eyes, most common caused by Sjorgen's. And, Sjorgen's is very common in ME. (notice, no ME/CFS this time. Going to take some getting used to.)
According to this: http://www.marysherbs.com/Miscellaneous/fingernails.shtml I have iron deficiency, low thyroid and hormonal imbalance. Hey, didn't have to look at my fingernails to know that.
Waiting for treatment guidelines. I don't think my doctor will care until she can do something about it. A new name doesn't make me better. And all she is interested in is in making me better, bless her heart.
Thanks Nielk .. Ive had trouble taking it all in.
yet Jason writes comprehensive reviews that cover biomedical aspects. he is not unable to understand it, and I think he actually is one of the people with the broadest grasp of the biomedical research, perhaps because of the fact that he is not conducting his own area of biomedical research (thus doesn't have a favored "section of elephant"). I find his absence perplexing. On the other hand, as has been mentioned, he was cited enough that the authors don't appear to have a problem with him, so that's good.
I think most of us know who these people are ... and realize these arent Wessely school belief CFS peoples so we dont need to fear there .. I have a big curiousity on how on earth they kept it secret they were doing this. One of the worlds best kept secrets
On the why did they keep what they were up to a secret.. I myself think it may of been a tactic and a wise one at that . These people KNOW what we've been put throu with the Wessely schoolers. Imagine what would of happened if it had come out this was being done. Would those Wessely belief ones have then been quickly trying to get their own "International" CFS definition out and faster then the ones doing this ME one??? I bet they would of done!! They've been hit with something they didnt see coming.
We've all seen evidence before just how fast they can get things out to try to keep us in their clutches... eg XMRV is discoveried and who right away is then is involved in XMRV study which is done and published in what had to be a record time!! I myself are glad this secret was kept and has come out the way it has. This is not something I'll be faulting but I think this was very well thought out and planned (secrecy included)
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