tag:blogger.com,1999:blog-4895604594896814289.post6706210271651434741..comments2023-08-20T01:37:48.791-07:00Comments on CFS Patient Advocate: A voice for the most severe ME patientsconsuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-4895604594896814289.post-52584965750544807902011-06-10T17:20:56.750-07:002011-06-10T17:20:56.750-07:00How they knew was to actually select a strictly de...How 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.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-34974539098063900442011-06-09T14:38:54.996-07:002011-06-09T14:38:54.996-07:00The "Think pple" know!The "Think pple" know!Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-42266629553921249532011-06-07T12:45:45.978-07:002011-06-07T12:45:45.978-07:00How did the WPI find XMRV in CFS without consideri...How did the WPI find XMRV in CFS without considering CFS to be something that patients were diagnosed with?Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-66852827947106991092011-06-05T20:48:26.708-07:002011-06-05T20:48:26.708-07:00Erik, No I do not say the mere usage of the term...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. <br />If 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.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-24772053910536693742011-06-03T19:29:01.779-07:002011-06-03T19:29:01.779-07:00To you, and certain vested interests, perhaps.
But...To you, and certain vested interests, perhaps.<br />But not to the WPI.<br /><br /> 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?<br /><br />-------------------------------------------------<br /><br />Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome<br />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, <br /><br />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 CFSErik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-36963249310135715202011-06-03T18:03:57.689-07:002011-06-03T18:03:57.689-07:00Erik, No just exposing the ME denialists - BECAUSE...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.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-3456928503024326902011-06-03T17:09:23.089-07:002011-06-03T17:09:23.089-07:00And what is the "CFS" whose name they ar...And what is the "CFS" whose name they are changing?<br /><br /> It is the "CFS" that WE say it is.<br />The "CFS" that is commensurate with ME!<br /><br />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!ErikMoldWarriornoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-39384732746495252982011-06-03T15:29:36.867-07:002011-06-03T15:29:36.867-07:00The objection is to the obfuscators who are obfusc...The objection is to the obfuscators who are obfuscating the real illness (ME) with CFS. Anyone can still advocate for CFS. <br /><br />Actually Erik there aren't many who accept and promote or defend CFS.<br />Does Chronic fatigue syndrome need a new name:<br />http://www.boston.com/lifestyle/health/blog/dailydose/2011/06/does_chronic_fa.html?comments=all#addComm<br />25% said CFS or ME/CFS; 73% said other or a different name.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-9658015883052954782011-06-03T13:33:06.451-07:002011-06-03T13:33:06.451-07:00Can you name so much a single such fictional perso...Can you name so much a single such fictional person?<br /><br /> If 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.<br /><br /> Obfuscators are the ones causing the damage.<br />For absolute crystal clarity, that means YOU.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-35944036884206380772011-06-03T10:55:49.157-07:002011-06-03T10:55:49.157-07:00The real damage has been from the CFS proponents w...The real damage has been from the CFS proponents who are ME denialists.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-5794169302575451382011-06-03T10:42:51.544-07:002011-06-03T10:42:51.544-07:00Yes, they did it to solve CFS.
As opposed to th...Yes, they did it to solve CFS.<br /><br /><br /> As opposed to the traiterous philosophy of turning around from writing things like "Understanding CFS" to saying that CFS cannot be understood.<br /> And literally becoming MORE abusive than the psychs, doubters, and CFS denialists in promoting the very viewpoint they once opposed.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-56643689583599542082011-06-03T05:43:53.530-07:002011-06-03T05:43:53.530-07:00Erik, you act as if this has never been brought up...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.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-38253645443124482312011-06-02T23:00:52.026-07:002011-06-02T23:00:52.026-07:00Or this?
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CFS ...Or this?<br /><br />----------------------------------<br /><br />CFS Patient Advocate <br /><br />Patient Advocate<br />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 Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-61285016082948689302011-06-02T22:41:12.489-07:002011-06-02T22:41:12.489-07:00People like this?
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...People like this?<br /><br />----------------------------<br /><br /><br />Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome<br /><br />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, <br /><br />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.ErikMoldWarriornoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-51510566817871327612011-06-02T19:19:53.422-07:002011-06-02T19:19:53.422-07:00We know the story, it is how to move forward that ...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.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-10102094228192949802011-06-02T11:10:46.207-07:002011-06-02T11:10:46.207-07:00Until you understand what is being done with CFS, ...Until you understand what is being done with CFS, you will never understand why ME will not be recognized.<br /><br /> Your efforts at pushback against CFS are counterposed against everyone who knows the real backstory, and why it is counterproductive to "give ground" on CFS. <br /><br /> I realize that you will not be convinced.<br />This debate is not for your benefit.<br /><br />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.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-41977291510062474262011-06-02T10:14:51.862-07:002011-06-02T10:14:51.862-07:00CFS is not ME. CDC was wrong and missed it. We wan...CFS is not ME. CDC was wrong and missed it. We want our correct diagnosis. You will not convince is that it is CFS.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-87895466978645183192011-06-01T16:12:06.745-07:002011-06-01T16:12:06.745-07:00Unnecessary or not, CFS was the term Stephen Strau...Unnecessary 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".<br /><br /> CFS is ME. That is calling it what it is.<br /><br />You are the the people trying to call CFS <br />"what it isn't"<br /><br /> 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.<br />It's the same one the CDC attempted to employ, right from the very start.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-39346052615951983572011-06-01T11:54:09.218-07:002011-06-01T11:54:09.218-07:00The issue is that it was taken from them but still...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.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-9855817326138252822011-06-01T11:38:20.144-07:002011-06-01T11:38:20.144-07:00One of the authors of the 1988 CFS definition, Dr ...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.<br /><br /> CFS was like a "pointer" toward more research.<br /><br />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.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-80163966286338708672011-06-01T09:24:06.130-07:002011-06-01T09:24:06.130-07:00Yes it does.
Everything in the CFS definition was ...Yes it does.<br />Everything in the CFS definition was taken from patients who had already been diagnosed with ME.<br /><br />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.<br /><br /> 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.<br /><br /> 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.<br /><br />As is the case with virtually all syndromes.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-56250676714505914552011-06-01T07:31:55.544-07:002011-06-01T07:31:55.544-07:00Erik, yours is the flawed logic. Ulcers have been ...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-63251159139119567092011-05-31T21:04:26.475-07:002011-05-31T21:04:26.475-07:00By your logic, any flaw in the definition, whether...By 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.<br /><br /> Malaria has nothing to do with plasmodium, because "malaria" means "bad air".<br /> H Pylori cannot be the cause of ulcers, because ulcers have been defined as a stress induced problem for over a century.<br />Barry Marshall must have discovered "H Pylori disease, but "by definition", that would have nothing to do with ulcers.<br /> And of course, ME is nothing much of an illness, because it's full name is "Benign Myalgic Encephalomyalitis".<br /><br /> So, "by definition" of your illness isn't "benign" enough to fit the word, this would removed you from the ME category.<br /><br />That's what the CDC did to us.<br />Your philosophy is taken right out of their handbook.<br /> Meanwhile "CFS" is still the same illness that the term was given to, regardless of whatever games people play with the semantics.Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-53026618981170895332011-05-31T19:50:57.827-07:002011-05-31T19:50:57.827-07:00Actualy it was missed because it was ME that was r...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-36222315067470720102011-05-31T17:00:00.525-07:002011-05-31T17:00:00.525-07:00It was NOT missed.
ME was one of the proposed nam...It was NOT missed. <br />ME was one of the proposed names for the new syndrome.<br /><br /> 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.<br /> 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.<br /> Bad though "CFS" may be, one cannot accuse the perpetrators of this syndrome for crimes they did not commit.<br /><br /> 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.<br /><br /> Saying that CFS is not ME is asserting that there was no malfeasance.Erik Johnsonnoreply@blogger.com