Consider for a moment the reality of this illness and of those who suffer at the very bottom. This is where the nuts and bolts of this illness presents itself and where research needs to be directed. Natalie Bouton has done a great service for the rest of us and for the uninitiated by giving us the InvestinME sponsored book "Lost Voices" which documents the most seriously ill ME patients. Soon we will be able to see an astonishingly powerful video produced by Natalie and her son Josh. It packs a wallop and presents this illness at its ground zero moment.
Another powerful articulate and sustained voice of the desperately ill has emerged recently and can be viewed here.
This site and book might be of use to you both:
ReplyDeletehttp://www.survivingsevereme.com/
ME patients should not bother going to the CFSAC but rather focus on proper recognition and diagnosis. Recreating some ME/CFS construct will only keep us in the same abusive CFS straight jacket.
ReplyDeleteJill is right. For nearly four centuries the ghastly neurological disease ME has been occuring, under various names. Annual epidemics are on record since 1934, Los Angeles,CA. Called in to observe an ME epidemic in Lake Tahoe,NE in 1985, the CDC invented CFS, a term useless for ME epidemics as patients had to report having felt fatigued for 6 months prior to presenting, and which denied the characteristic diagnostic signs and symptoms of ME. The ME experts, Dr Shelokov and Dr Parish, walked out of the meeting in protest. Until CFS patients insist on proper diagnosis and medically appropriate treatment of their diseases, the mistreatment will continue. Until ME patients insist on their disease being rapidly and accurately diagnosed and treated, the mistreatment will continue. Those interested can read about this in The Hummingbird's Foundation for ME www.hfme.org
ReplyDelete"ME/CFS" is the very correction of this situation that is being called for.
ReplyDeleteThere's really no getting around it.
The very act of explaining that CFS was applied to ME makes it clear why ME/CFS has become necessary.
ME/CFS is absolutely uncalled for. CFS was incorrectly applied to ME, which is a fairly well known fact. Whatever the intentions or for whatever reason, it did not capture the illness which it was intended to depict. Patients have suffered for it ever since.
ReplyDeleteOf course there is a way around it. That is what advocacy is about.
The CFSAC is NOT a voice for ME patients.It is a CFS committee. If we (those with ME) stop playing the CFS shell game we'll all be better off.
Jill, do you agree that Myalgic Encephalomyelitis is the "Royal Free Disease"
ReplyDeleteas described by Ramsay/Hyde?
And that to obtain an ME diagnosis, the patients condition must conform to
Dr Byron Hyde's "Complexities of Diagnosis"?
Are you aware that the "itis" in ME is a source of controversy because the classical form of inflammation indicated by the classical medical definition of "itis" is not found in ME?
If one were to uniformly apply your stringent requirement of accurate-representation to ME, have you granted some kind of exemption that this same thought process does not apply?
Or is it up to you to selectively make up your own rules as you go along?
To obtain an ME diagnosis patients must fit Ramsay or any pre CFS ME definitions. Hydes complexity of diagnosis pertains to the CFS misinformation and improper conflation and mixing of the two. ME itis is accurate so this is another incorrect objection.
ReplyDeleteNobody diagnosed by Dr Hydes "complexities of diagnosis" OR by the Canadian Consensus Guidelines received a correct diagnosis that qualifies them as having ME?
ReplyDeleteWhat should they call their illness, then?
Inflammation, "-itis", has been documented in the brain and spinal cord by many pathologists post mortem in patients accurately diagnosed with ME. See: A. Marinacci,patients in the 1934 LA CA epidemic, A.Chaudhuri, British patients over the past 30 years, and many others in the past 80 years which are public record. Managing this disease, ME, is hard enough without people spreading blatant lies.
ReplyDeleteByron Hyde, MD, carefully distinguishes between ME and CFS, see his book Missed Diagnoses and his 2003 definition of ME. He has seen thousands of patients misdiagnosed with CFS, which he has been able to accurately diagnose and refer for treatment to the relevant medical specialists. Criminally negligent comes to mind as a term to describe anybody diagnosing CFS.
ReplyDeleteProfessor Malcolm Hooper points out the "itis" controversy by stating that there is indeed "evidence" of inflammation.
ReplyDeletehttp://www.investinme.org/Article%20010-Encephalopathy%20Hooper.htm
But that evidence has not met the medical professions standard defintion for "myelitis".
There is more evidence confirming metabolic dysfunction than there is of viral inflammation of the spinal cord.
Which is part of the reason Myaligic Encephalomyelitis is not taken as seriously as it should be.
The ME community insists that "myelitis" is present and the medical profession insists that what they define as "itis", isn't there.
The same argument you wish to use to defeat CFS also applies to ME.
If you wish to hold to that standard, you should be careful what you wish for.
Nice to know that you think that virtually every CFS physician, without exception, is criminally negligent.
Erik, It is simple: those with ME want *their* illness called and diagnosed as ME. This is basically not playing the CFS shell game. The medical community does not insist that itis isn't there, as anonymous just demonstrated. This is another red herring. No, the same agrument does not apply. CFS physicians who misdiagnose those with ME are negligent, as are all drs who misdiagnose anything. It is what it is.
ReplyDeleteYes they do insist that "itis" that meets their medical standards of inflammation isn't there.
ReplyDeleteThat is the rationalization for the move to "Myalgic Encephalopathy" and why more subtle defects such as those in the basal ganglia are used as evidence that some inflammation IS present in ME.
ME is not an official diagnosis in the USA.
Physicians who properly diagnose their patients with real CFS, as Dr Cheney and Dr Peterson do, are operating within the constraints the system imposed on them.
They are neither negligent or criminal for doing the best they can in a difficult situation.
-itis meets the standard for ME patients but not necessarily for CFS patients. CDC's depressed GA cohort will not have inflammation (but they do have CFS. Real CFS is anyone who meets the criteria. The -itis isn't accurate is a red herring. The opathy ruse is another red herring. ME can be diagnosed anywhere. If the best they can do is a misdiagnosis then they are negligent.
ReplyDeleteFrom what I hear, the UK failure to attach credence to ME is largely based on the failure to detect a medically defined standard of inflammation for myelitis.
ReplyDeleteAside from that...
Every time you say that the ME-literate doctors walked out in protest because an illness they diagnosed as ME was being renamed CFS, yet then turn right around and say that CFS is not ME but is some other disease,
this what you are saying.
Hyde, Parish and Shelokov were so damned ignorant and stupid that they couldn't tell the difference, but the CDC COULD.
Hyde, Parish and Shelokov were flat-out wrong to protest, and the CDC was right to ignore them and go ahead with the naming process.
Forget about name change, because if this is the case, CFS really is a different illness.
Forget also about ME having much credibility, for the ME literate experts couldn't tell the difference.
The ME literate doctors were wrong, misinformed and negligent, unable to discern between ME and CFS.
The CDC was right and always were, they are the true experts!
You can't have it both ways.
Either the ME literate doctors were right to protest, and CFS is ME... when the CFS is properly diagnosed using the original evidence.
OR... the ME literate "experts" are a bunch of screwups who don't know what ME is, and the CDC are the ones who had it right all along.
You can't argue it both ways.
As the old song says, "If you choose not to decide, you still have made a choice".
Erik - Again, apparently what you hear is wrong. Maybe CFS was supposed to be ME but it NEVER was - that is why ME drs protested - thus means it wasn't. So apparently they could tell the difference, which is why they walked out. Otherwise would not have mattered. CFS is a fatigue syndrome, ME is not; therefore CFS is not ME.
ReplyDeleteCFS, as stated in the Holmes definition, was to "identify people with a possible unique medical entity".
ReplyDeleteThe entity is publically very well-known to be attached to a specific cohort, so one cannot say CFS was for some unrelated illness that wasn't even present.
The cohort which was under scrutiny by the Holmes committee was said by Hyde, Parish and Shelokov to "possess all the primary determinants of ME"
The CFS term was applied to the disease that the ME doctors walked out in protest over.
Not to some other unrelated abstract illness that existed only in the CDC's imagination.
The very fact that Hyde, Parish and Shelokov walked out specifies that the CFS term was applied to this illness and no other.
We know how it was intended. But it was misapplied.
ReplyDeleteCFS does not posess the primary determinants of ME. The primary determinants of ME are CNS dysfunction; of CFS it is fatigue. Being too hung up on Incline Village is just a distraction and time waster.
If one cares about truth and if it means anything to them that SCIENCE must prevail,
ReplyDeletethey would stand up for the documented facts of the matter, rather than surrender to deliberate falsification and settle for sloppy expediency.
The documented facts are that Incline Village was ME that was missed and recast as CFS. Patient have suffered ever since. For science to prevail we need an appropriate dx. CFS is not an appropriate dx for ME patients and never was.
ReplyDeleteIt was NOT missed.
ReplyDeleteME was one of the proposed names for the new syndrome.
The CFS definition states within the proposal that it was not intended to catch all cases of illness OR be used as a constraint on what the entity is.
It clearly states that it is an "operational concept", and as such, is not an ultimate "diagnosis" but rather, a starting point to further investigation.
Bad though "CFS" may be, one cannot accuse the perpetrators of this syndrome for crimes they did not commit.
It was the failure to follow-up and make it clear that CFS was intended to research a KNOWN medical entity that was congruent with ME that truly constitutes the malfeasance.
Saying that CFS is not ME is asserting that there was no malfeasance.
Actualy it was missed because it was ME that was reinvented as CFS. CFS is not ME by definition. Whatever was intended, in the general scheme of things, is not the only issue. It is really one more ME outbreak. Malfeasance is not the issue for true advocates, it is ensuring a proper diagnosis so that patients will be preprerly treated and not (mis)diagnosed andf mistreated.
ReplyDeleteBy your logic, any flaw in the definition, whether either deliberately contrived or inadvertantly included, is what must be adhered to, regardless of the disease entity itself.
ReplyDeleteMalaria has nothing to do with plasmodium, because "malaria" means "bad air".
H Pylori cannot be the cause of ulcers, because ulcers have been defined as a stress induced problem for over a century.
Barry Marshall must have discovered "H Pylori disease, but "by definition", that would have nothing to do with ulcers.
And of course, ME is nothing much of an illness, because it's full name is "Benign Myalgic Encephalomyalitis".
So, "by definition" of your illness isn't "benign" enough to fit the word, this would removed you from the ME category.
That's what the CDC did to us.
Your philosophy is taken right out of their handbook.
Meanwhile "CFS" is still the same illness that the term was given to, regardless of whatever games people play with the semantics.
Erik, yours is the flawed logic. Ulcers have been defined by the pathology, the cause was unknown and was presumed incorrectly. These are causes, not the illness. Malaria was the recognized disease designation and was not changed to plasmodium disease, as with AIDS when HIV was discovered. Once the cause is known there is no need for a definition. But until then the definition must match the disease. CFS doesn't match what is known as ME.
ReplyDeleteYes it does.
ReplyDeleteEverything in the CFS definition was taken from patients who had already been diagnosed with ME.
The CDC was very careful to include barely enough "true" elements to avoid outright discordancy with ME, but not so many that the illness entity was clearly recognizable as a postviral disease.
In this way, CFS does indeed loosely describe an illness that possesses "all the primary determinants of ME", but so poorly that if one treats the "definition as the disease" rather than learning more about the actual illness that was under scrutiny, they would be certainly misled about what kind of illness it was.
Since it only takes a few seconds to learn a few of the immune abnormalities which were present in the prototypes for CFS, it seemed that only a small percentage of people would be unable to discern that there is more to a syndrome than just its own description.
As is the case with virtually all syndromes.
One of the authors of the 1988 CFS definition, Dr James Jones, who was NOT sympathetic to the evidence, said of the new definition that since it was not the result of experimental work, but only a means to apprise the physician-population that an attempt to assess patients with this condition was underway... that it didn't HAVE to encompass the full spectrum of the disorder.
ReplyDeleteCFS was like a "pointer" toward more research.
As we have seen, this "CFS exercise" turned out to be like throwing a ball for a lazy dog who doesn't go after it... pointing... and all the dog looks at is your finger.
The issue is that it was taken from them but still didn't really fit. If it loosely describes ME, as you say, it also loosely describes psych, mood disorders. So it doesn't work. We need ME as ME before CFS was invented. Again, Incline Village is really just an ME outbreak, not elevated to some out of proportion ground zero status. this is just plain wrong. CFS was unnecessary and has been damaging. Call it what it is.
ReplyDeleteUnnecessary or not, CFS was the term Stephen Straus and the Holmes committee applied to "a new syndrome" that was directly based on what Dr Hyde described as "a typical outbreak of ME".
ReplyDeleteCFS is ME. That is calling it what it is.
You are the the people trying to call CFS
"what it isn't"
Your attempts to misportray the facts in pursuance of a dishonest agenda to make CFS "vanish by semantics" is a tactic we've seen before.
It's the same one the CDC attempted to employ, right from the very start.
CFS is not ME. CDC was wrong and missed it. We want our correct diagnosis. You will not convince is that it is CFS.
ReplyDeleteUntil you understand what is being done with CFS, you will never understand why ME will not be recognized.
ReplyDeleteYour efforts at pushback against CFS are counterposed against everyone who knows the real backstory, and why it is counterproductive to "give ground" on CFS.
I realize that you will not be convinced.
This debate is not for your benefit.
It is to show others that your arguments contain irreconciliable self-contradictions, are based solely on semantic distortions, and are aligned with the goals of those who want to roll back every inch of progress "CFSers" have made in getting the true story out to the public.
We know the story, it is how to move forward that matters. We all understand what is being done with CFS, this is the problem. Have an accurate diagnosis is not semantic distortions. Every inch - of progress - that about sums it up - after 20 years. With CFS it won't go much beyond that. Others are capable of following and understanding.CFS is doing the damage and those promoting it contribute to it.
ReplyDeletePeople like this?
ReplyDelete----------------------------
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Vincent C. Lombardi,1,* Francis W. Ruscetti,2,* Jaydip Das Gupta,3 Max A. Pfost,1 Kathryn S. Hagen,1 Daniel L. Peterson,1 Sandra K. Ruscett...i,4 Rachel K. Bagni,5 Cari Petrow-Sadowski,6 Bert Gold,2 Michael Dean,2 Robert H. Silverman,3 Judy A. Mikovits1,
Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines after their exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.
Or this?
ReplyDelete----------------------------------
CFS Patient Advocate
Patient Advocate
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job.
Erik, you act as if this has never been brought up or explained. We all know what the WPI did and why and it was explained in the addendum. They did not try to solve the definitional issues. That is up to us. If the science plays out, fine, but we would still be better off with a legitimate dx and NOT constantly being reduced to chronic fatigue or mixed in with those who have psych problems. Most people do get this.
ReplyDeleteYes, they did it to solve CFS.
ReplyDeleteAs opposed to the traiterous philosophy of turning around from writing things like "Understanding CFS" to saying that CFS cannot be understood.
And literally becoming MORE abusive than the psychs, doubters, and CFS denialists in promoting the very viewpoint they once opposed.
The real damage has been from the CFS proponents who are ME denialists.
ReplyDeleteCan you name so much a single such fictional person?
ReplyDeleteIf you think proponents of the truth about CFS are causing damage by using the term in the course of clearing this up, your philosophy still constitutes an assault on the WPI and others like CFS Patient Advocate.
Obfuscators are the ones causing the damage.
For absolute crystal clarity, that means YOU.
The objection is to the obfuscators who are obfuscating the real illness (ME) with CFS. Anyone can still advocate for CFS.
ReplyDeleteActually Erik there aren't many who accept and promote or defend CFS.
Does Chronic fatigue syndrome need a new name:
http://www.boston.com/lifestyle/health/blog/dailydose/2011/06/does_chronic_fa.html?comments=all#addComm
25% said CFS or ME/CFS; 73% said other or a different name.
And what is the "CFS" whose name they are changing?
ReplyDeleteIt is the "CFS" that WE say it is.
The "CFS" that is commensurate with ME!
Not the "fatigue illness" that YOU, the psychs and the denialists are attempting to misportray it as, in your blatantly dishonest strategy of AGREEING with the CFS denialists!
Erik, No just exposing the ME denialists - BECAUSE people hate the name CFS. They do not want a CFS diagnosis as the poll attests. CFS is not what we say it is. CFS is a fatigue syndrome.
ReplyDeleteTo you, and certain vested interests, perhaps.
ReplyDeleteBut not to the WPI.
When you switch between saying what good work the WPI does, to assertions that the mere usage of the term qualifies as causing damage and harm, do you honestly have no memory or cognizance of the disparity?
-------------------------------------------------
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Vincent C. Lombardi,1,* Francis W. Ruscetti,2,* Jaydip Das Gupta,3 Max A. Pfost,1 Kathryn S. Hagen,1 Daniel L. Peterson,1 Sandra K. Ruscett...i,4 Rachel K. Bagni,5 Cari Petrow-Sadowski,6 Bert Gold,2 Michael Dean,2 Robert H. Silverman,3 Judy A. Mikovits1,
Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines after their exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS
Erik, No I do not say the mere usage of the term, I said as a diagnosis. It is you who continues to mislead, misrepresent and distort.
ReplyDeleteIf anything is explained, you ignore it anyway and come up with your barrage of accusations and insults. It is interesting to watch and speculate but I am not interested in your never-ending re-runs.
How did the WPI find XMRV in CFS without considering CFS to be something that patients were diagnosed with?
ReplyDeleteThe "Think pple" know!
ReplyDeleteHow they knew was to actually select a strictly defined narrow group, who could still meet the criteria. That's what the real think people know.
ReplyDelete