Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.
Julie Andrews for "DESPICABLE ME?"
Sounds good to me!
Charlie sheen thinks he is jesus christ with his tiger blood, maybe its infected with xmrv.
luv your sense of humor tulip, its whacky like mine, he he.
If you can prove that I do not have PENE and you do Tulip then these criteria would be without doubt above and beyond anything that has gone before. Changing the name from PEM to PENE which is not a recognised medical term (another obstacle to overcome and not insignificant either), will not cut the mustard.
It sounds great to me as a patient but I am not relevant in this debate. This is about how NICE and all the other regulatory authorities the world over should accept this nomen and what it describes as a disgnostic tool.
When people are diagnosed with Encephalomyelitis - even under Ramsay - it did not involve testing. And until there are specific tests that actually do separate one patient from another, and - perhaps more importantly - are actually a reflection of an agreed upon definition of Myalgic Encephalomyelitis (something never before agreed upon in terms of definition), then I cannot see it happening.
I am sorry and I am not being overly negative, just trying in my haphazard and layman's way, to be perhaps more realistic.
Hi Firestorm, note the authors Light and Stevens. You ask if PENE can be proved? Guess what their research is all about? Klimas is also doing a study on this. PENE is measurable, reproducibly. Extremely sick patients can't handle the current protocols because they involve intense exercise, but this will change. Mild and many moderate patients can certainly handle the exercise long enough to be diagnosed. If Klimas can work with the Lights to get a biochemical signature, then even exercise testing wont be required. My guess is that this definition is just an opening move in a larger strategy. When the diagnostic and treatment guide comes out, we may know a lot more. Bye, Alex
I am aware of that Alex and also of the muscle studies being undertaken here in the UK at Nottingham University, which also seem to be yielding results (but muscles are not mentioned in these criteria either as it happens).
My point is that these criteria have been released now. Not when research into testing for PENE is complete. So what has changed? It is still only workable on the basis of a patient saying 'Yep that's me' in the same way that polls on some forums are asking 'Do you fit the new criteria?'.
Further, and as I believe the 'International' ME Association (whatever) said yesterday, these criteria do not point to testing/examination of our brain/spinal cords - which define Encephalomyelitis - along with muscles...
When the clinical guide is produced to accompany these criteria maybe some of my questions/concerns will be answered. But I have yet to see research that has been accepted proving anything that fulfills these criteria.
Maybe though, there won't be any definitive proof. Maybe we will still - in the main - be assessed by doctors as having this condition based on a review of our reported symptoms and case history and exclusionary blood tests. Maybe I am (we are) making more out of this than we should.
At this moment in time - and as I am still reading through the accompanying research (not revealing much to me at all so far) - I can't see this new criteria cutting any more ice than the CCC. And remember Jason still has yet to comment and he is working on a separate project. Also weren't the CCC being tightened up as well? Perhaps that is what Jason is working on?
Food for thought
I like this new definition but I'd love to see some data to back it up.
At the heart of all this is whether ME is a distinct clincial entity (perhaps entities) as I presume everyone here believes - or, as people like Simon Wessely argue, just one end of the spectrum of Chronic Fatigue. In fact Simon Wessely and Peter White have argued that adding the requirement for more symptoms (as this case definition does) make it more likely that it will include those with a primarily psychological illness.
There may be a way to help resolve this argument that could help prove this definition is better than other definitions and so should be widely adopted.
Basically, it involves looking to see if there are 'natural boundaries' separating ME as defined here and other illnesses such as "CFS" defined more widely (eg by the Empirical Criteria, Oxford Criteria or even Fukuda), MDD or simple Chronic Fatigue. This is based on the work of a guy called Kendell who has looked at the issue in general of how you define a disease (interestingly, he doesn't think psychologists are very good at it, even though he is one himself).
What you would do is take a large group of patients with ME defined according to these criteria, as well as patients with the other illnesses mentioned above plus some healthy controls. Then you'd collect a whole load of data on them: symptoms, standard blood tests, tests for possible biomarkers like Natural Killer cells and gene expression; pyschological profiles; fatigue and function scores; maybe even some exercise tests too.
Then you'd analyse the data and see if the ME patients clustered away from the CFS patients, Chronic Fatigue patients, MDD and of course the healthy controls. If they do cluster into a separate group, then you have good evidence that these new Criteria are indeed selecting a more meaningful group of patients.
The CDC tried something a bit like this a few years ago but it was way too small and relied on the Empirical criteria for selection, so it probably only had maybe 25 CFS patients (Fukuda definition) and probably even fewer still Canadian criteria patients. It's arguable they looked at the wrong biomarkers too.
That would be an interesting project. I guess it all comes down to money though (and motivation on the part of the CDC etc). It would be an expensive study.
That doesn't sound like the CDC!!! (ironic remark)
Realistically, I don't see how we will ever get specific tests without a decent set of criteria to define patient cohorts for the research.
in response to a post of Jaces in which the National ME/FM action group was quoted in it.
Back to the old arguement of whether ME should be separated from CFS. I think most of us do realise how that will actually help research anand most want this split (its something most ME people have been calling for for years!!).
diagnosing ME/CFS and doing research under that label.. I cant see how that could be said that is research separating the two. MOST research out there is CFS research and not research using the CC guidelines or not ME research. This is why we are all still like in the dark ages when it comes to ME.
I cant see how we can expect basically every ME/CFS org to be involved in doing the defination.. isnt 25 ME/CFS experts who are scientists and doctors enough? I dont understand why there is currently what seems to be a "fear compain" (sorry i cant think to spell) going on ...
What is going on is making me wary of certain people and the national ME/FM action network. (its making me think of the split English orgs where some support ME while others dont). From what it appears this same situation is going to go on now elsewhere with orgs taking up certain sides. Well Im glad if that happens as it will show us which we wish to support and which we dont wish to support and for myself.. I will not be supporting national ME/FM action network no more as it isnt supporting ME but supporting watered down ME which is CFS...
Correct me if im wrong someone but wasnt the ME/FM action network responsible for creating the canadian definition??? Maybe the ME/FM action network is reacting out of fear of loosing ownership of ME to which the CC definition was its baby???... it wanted to be different from the other CFS definations back then or why form the canadian consensus defination??? So why is it against a change now but backed change in the past??? Why has that org changed???? (I guess all orgs can change over time and a good org may some day take on other views). Why dont it wish for a similar defination to its own to be International??? Ignore this paragraph or correct me if ive screwed up.
Right now Im in confusion of not all the orgs not backing the majority.
It is good we are starting to see various orgs true colours and how they think about things nowdays. So im going to start to try to look at this as a positive thing.
I love this thought of yours Alex. ***wondering now else they may be up to***
I agree with this quote. Without good defining criteria, we have less chance of getting specific tests. The criteria is the big underlaying thing to everything else.
I find it usually goes over most people's head lol.
I think the onus is on us to let the organizations that represent us know what we think. This may a tricky time for them. They have a 'base' to consider and may understandably be trying to be all things to all people.
The National ME/FM Action Network hasn't yet put out an official statement. I like neither the "I feel personally" style nor the comments themselves. I hope the organization can and will do better!
Might someone with journalistic chops (Cort? JSpotila?) interview a spokesperson from the authors of the new International Criteria? This might help answers some questions about the impetus behind this publication at this time, the motive behind this revision, the intentions of the authors, and all those other questions we keep wondering. Usually a paper has one author named as the contact person. Sorry, not up to looking into the details at present. Just a suggestion, or maybe, a wish.
It would not be cheap, but it would have the potential to resolve the arguments about which case definition is 'right', and as that is probably the biggest issue in research it's a pretty big prize.
The natural boundary that distinguishes ME from most other diseases is twofold:
(1) ME is postviral
(2) ME shows inflammation of the brain and the spinal cord
Further, ME has at least one clear signature which is the protein spectrum in the spinal fluid. Most likely, cytokine activation in the brain will turn out to be another.
The announcement by the coeditors states their motive in the last paragraph. I would ask, if not now, when?
Myalgic Encehalomyelitis: International Consensus Criteria (ICC)
We are pleased to announce that the International Consensus Criteria paper, which is presently in accepted preprint format online in the Journal of Internal Medicine, will be available free online when it is assigned an issue.
The initiative for and development of the ICC for ME was done outside any organization without any financial or other assistance or sponsorship.
We would like to thank all members of the international panel, representing 13 countries, for graciously volunteering their time and expertise without recompense and working together to bring the International Consensus Criteria for Myalgic Encephalomyelitis to fruition.
We all hope the International Consensus Criteria will improve recognition of Myalgic Encephalomyelitis, promote consistency in diagnosis internationally, and lead to appropriate treatment in a timely fashion.
Myalgic Encephalomyelitis: International Consensus Criteria Co-editors
Bruce Carruthers, MD, CM, FRCPC
Marj van de Sande, B Ed, Grad Dip Ed
Interesting observation by Malcolm Hooper today (Wessely's Words Revisited thread)
Can it be co-incidence that this latest well-orchestrated campaign of media coverage of the alleged threats to Wessely and his colleagues who share his views about ME has been mounted hard on the heels of the publication by Carruthers et al of the International Consensus Criteria for diagnosing ME compiled by 26 researchers and clinicians from 13 countries (Journal of Internal Medicine; Accepted Article: doi:10.1111/j.1365-2796.2011.02428.x)?
The sound biomedical evidence upon which those criteria are based completely vitiates the belief of Wessely and colleagues about the psychiatric nature of ME, so what does he do?
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