Ember
Senior Member
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- 2,115
Thanks, Nielk.
Research 1st has now posted a write-up: www.research1st.com/2011/07/25/me-case-definition/
Research 1st has now posted a write-up: www.research1st.com/2011/07/25/me-case-definition/
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Celebrating the ICC!!!
- Thread starter Nielk
- Start date
I like the graphics in the research1st post, too; the chart helps explain the requirements
Nielk
Senior Member
- Messages
- 6,970
I have Myalgic Encephalomyelitis.
It's been confirmed this morning by my specialist in NYC.
What does that do for me?
Right now not much. Except that I don't have to use the pathetic CFS name again.
I am hoping that this will lead to more serious studies.
Maybe some people in my life who secretly or openly have mocked my "fake" disease will start taking it seriously.
Time will tell if this will happen.
Mostly, my hope is that the whole medical community will take this seriously. The Psychiatrists will leave us alone.
I am hoping for big change.
Maybe I am naive but, no one can foretell the future of how this is going to play out.
It's been confirmed this morning by my specialist in NYC.
What does that do for me?
Right now not much. Except that I don't have to use the pathetic CFS name again.
I am hoping that this will lead to more serious studies.
Maybe some people in my life who secretly or openly have mocked my "fake" disease will start taking it seriously.
Time will tell if this will happen.
Mostly, my hope is that the whole medical community will take this seriously. The Psychiatrists will leave us alone.
I am hoping for big change.
Maybe I am naive but, no one can foretell the future of how this is going to play out.
TheMoonIsBlue
Senior Member
- Messages
- 442
Amen! Now, do I have the nerve to say ME to doctors many of whom still think "CFS" is simple Chronic Fatigue and have no idea what ME is? Most don't even recognize the immune dysfunction in "CFIDS".
Is ME going to now officially exist in the US?
Nielk
Senior Member
- Messages
- 6,970
That's my hope. The more people show the paper to their doctors and insist on the ME diagnosis, the more of a chance we have that it's going to stick.
My specialist sees over 800 patients who he will now use the ME diagnosis.
I think that if one doesn't fit all the criteria they would be categorized as atypical ME.
We also need to send letters all over about this like CFSNOVEL suggested.
We have to seize this opportunity which has been given to us with the backing of major players in the field.
Well, the treatments recommended by the CDC for CFS feature CBT and GET ... so I'm pretty sure I don't have the US version of CFS
Might as well call it ME!The psychs will NEVER leave us alone! But they may be put in their place and *hopefully* a few will go to that special place in hell...
Nielk
Senior Member
- Messages
- 6,970
P.A.N.D.O.R.A. response to ICC
International ME Consensus Criteria - A message from the Founder of PANDORA
by P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. on Wednesday, July 27, 2011 at 6:56pm
Dear Friends,
As we have been asked about the recent International ME Consensus Criteria publication PANDORA would like to share the following:
We are in the process of reading and evaluating this breakthrough publication in the ME/CFS and in the NeuroEndocrineImmune diseases (NEIDs) scientific community.
We have been informed that there will be a session devoted to case definitions at the upcoming IACFS/ME Conference in Ottawa in September, hosted by the National ME/FM Action Network (Canada), where many of the scientists involved in the new definition will be attending. We look forward to learning more and participating in the overall discussion. We expect that by then, a greater consensus and understanding of such proposal will be shared.
Dr. Bruce Carruthers is one of the invited speakers and will be speaking on the subject of the new, international case definition. Drs. Leonard Jason and Beth Unger are also invited speakers. The session will be chaired by Dr. Kenneth J. Friedman. Subsequent to the presentations, there will be an opportunity for discussion. For those not in attendance, a DVD of the conference will be available for purchase.
We believe this publication is a historical one. It clearly sends a message to health government agencies in the U.S. and across the globe that it is time for a change and the time in now.
In Good Health and In Beauty,
Marly Silverman
Founder
P.A.N.D.O.R.A.
www.p-a-n-d-o-r-a.org
International ME Consensus Criteria - A message from the Founder of PANDORA
by P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. on Wednesday, July 27, 2011 at 6:56pm
Dear Friends,
As we have been asked about the recent International ME Consensus Criteria publication PANDORA would like to share the following:
We are in the process of reading and evaluating this breakthrough publication in the ME/CFS and in the NeuroEndocrineImmune diseases (NEIDs) scientific community.
We have been informed that there will be a session devoted to case definitions at the upcoming IACFS/ME Conference in Ottawa in September, hosted by the National ME/FM Action Network (Canada), where many of the scientists involved in the new definition will be attending. We look forward to learning more and participating in the overall discussion. We expect that by then, a greater consensus and understanding of such proposal will be shared.
Dr. Bruce Carruthers is one of the invited speakers and will be speaking on the subject of the new, international case definition. Drs. Leonard Jason and Beth Unger are also invited speakers. The session will be chaired by Dr. Kenneth J. Friedman. Subsequent to the presentations, there will be an opportunity for discussion. For those not in attendance, a DVD of the conference will be available for purchase.
We believe this publication is a historical one. It clearly sends a message to health government agencies in the U.S. and across the globe that it is time for a change and the time in now.
In Good Health and In Beauty,
Marly Silverman
Founder
P.A.N.D.O.R.A.
www.p-a-n-d-o-r-a.org
This is great, great, great news! :victory:
So great, in fact, I gave it its own thread where we can just relax and party about how wonderful it is.
Those looking for more detailed discussion on the subject may head over to the Discussion of the NEW International Criteria thread.
*Hands out free balloons*
So great, in fact, I gave it its own thread where we can just relax and party about how wonderful it is.
Those looking for more detailed discussion on the subject may head over to the Discussion of the NEW International Criteria thread.
*Hands out free balloons*
Ember
Senior Member
- Messages
- 2,115
Here's the announcement some were looking for:
Announcement
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
Announcement
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
Nielk
Senior Member
- Messages
- 6,970
Thanks Ember for finding this announcement.
We have been complaining about a name change for so long.
Here we have an opportunity to use this consensus to our advantage.
I hope that people will seize this opportunity and not be afraid to use the name ME.
The more we use it whether in writing or talking, the more it will get accepted.
If we just throw our hands up at this time and say it's no use - this will never be adopted - there is no validity to it- then we would have missed a big opportunity.
I'm not saying that this is going to be easy or that this will automatically force the CDC or HHS to validate this as the new current criteria but, if we don't help it along, we will have ourselves to blame.
I also know that these things take time. Any change takes time especially when it comes to our illness.
This is just a beginning but, a very welcome beginning!
Yes, it's true that it currently doesn't change our situation. We still don't have a definite cause or treatment yet.
I think that this will get us there faster.
The future studies will be more efficient and uniformed.
It's a step closer to being an accepted physical illness.
For all these reasons - I celebrate.
We have been complaining about a name change for so long.
Here we have an opportunity to use this consensus to our advantage.
I hope that people will seize this opportunity and not be afraid to use the name ME.
The more we use it whether in writing or talking, the more it will get accepted.
If we just throw our hands up at this time and say it's no use - this will never be adopted - there is no validity to it- then we would have missed a big opportunity.
I'm not saying that this is going to be easy or that this will automatically force the CDC or HHS to validate this as the new current criteria but, if we don't help it along, we will have ourselves to blame.
I also know that these things take time. Any change takes time especially when it comes to our illness.
This is just a beginning but, a very welcome beginning!
Yes, it's true that it currently doesn't change our situation. We still don't have a definite cause or treatment yet.
I think that this will get us there faster.
The future studies will be more efficient and uniformed.
It's a step closer to being an accepted physical illness.
For all these reasons - I celebrate.
SilverbladeTE
Senior Member
- Messages
- 3,043
- Location
- Somewhere near Glasgow, Scotland
I'll settle for the core of the "Weasel Group" being tried in The Hague for Crimes against Humanity, and them spending 30 years in jail.
Ember
Senior Member
- Messages
- 2,115
I'm with you, Nielk, in not being prepared to look this gift horse in the mouth! The International Consensus Panel has done for us what we couldn't possibly do for ourselves. We've been given such an opportunity.
I was happy, by the way, to pass along your sentiments (with roses) to Dr. Carruthers. I mentioned that the ICC was already being used to diagnose ME in New York. Speaking of the research, he pointed out that there's nothing to stop anyone from using these criteria now.
Thank you for your encouraging words. So far I've contacted Marjorie van de Sande to express my thanks and the National ME/FM Action Network to voice my support for the ICC.
Let's celebrate...and do more than celebrate.
Nielk
Senior Member
- Messages
- 6,970
I'm so happy to hear this Ember.
I would like to ask forum members of ideas of how to disseminate this information in an effective way and what can we as patients do to promote awareness.
Any advice is very welcome.
Maybe we can join in an effort to promote this to doctors and the public.
Thank you,
Nielk
Ps. I understand the feeling of revenge to the psychs like Wessley for his total and relentless abuse of patients suffering from this severe physical illness. I think that the more awareness of papers like this new ICC authored by so many excellent doctors with so many years of experiences and looking at this illness as an organic physical disease can only help the cause of the fight against these abusive psychs. I really hope too, that we will see the day that he will be held accountable for ruining the lives of so many people. There will be a day of reckoning. The sooner the better!
hich is very much deserved. I think that by promoting