Hi SOC RE Um.... you seem to be missing an obvious point. ME patients ordinarily have subnormal temperature. That means that when they do run a fever, their increased temperature is within the normal range for a healthy person. Doctors ignorant of this symptom often state there is no fever when in fact the PWME's temperature is running 2-3 degrees above their personal normal body temperature. The whole question of whether a PWME is running a persistent fever is most definitely not a straightforward one given our dysautonomia.
This is pure conjecture, there is no proof whatsoever that having a subnormal temperature stops you getting a high temperature, and many patients do get other illnesses, and do get high temperatures. And why are you talking about PWME, both I and doctor Mirza are talking about CFS!!!! please read properly before criticizing people’s posts! CFS patients by definition does not have subnormal temperatures.
RE Wow, are you behind the knowledge curve! The information you're giving here is 15-20 years old. Most of it has been refuted, modified or corrected since then. Especially the bit about kissing.
Actually I’m not behind the knowledge ball these are proven facts, agreed on by the scientific community, as I have just stated to Heaps, the work of the likes of Dr Lerner are not 100% proven scientific facts, they are only unproven hypotheses!
The principal mode of infection for EBV is agreed to be by the entire scientific community to be through saliva, sure this does mean if someone spits in your mouth, or if you drink from an unsterilized glass that has someone else’s saliva on it then you can get it that way, but the principle way that humans exchange saliva is through kissing and this is how most people get it, which is why it is known as the kissing disease. If you are ignorant of even these rudimentary scientific fact about EBV, I think it would be wise to keep your medically illiterate opinions to yourself,
RE But PWME very often do have symptoms consistent with an active EBV infection along with high antibody titres. Dismissing high antibody titres because healthy people can have high antibody titres is ridiculous when the patient is not a healthy person.
If people have symptoms consistent with active EBV infection E.G they have a fever and high white cell counts. They don’t have CFS! It’s what all the definitions say! Again you’re talking about PWME, both I and doctor Mirza are talking about CFS!!!!
RE High titres are considered a sign of an active infection in HIV and transplant patients, so why not also in PWME who are also immune impaired?
No high titres and the symptoms of EBV high temperature etc are considered a sign of active infection in HIV and Transplant patients, not high titers by themselves.
By the very tests you just said are unreliable. So EBV tests are only unreliable when they suggest active EBV in a PWME, but not when they show no active EBV infection in PWME?
EBV tests only mean anything when the patients has signs of infection e.g. temperate and increased white cell counts, the patients in these epidemics did not have these symptoms so it wasn’t EBV, having high EBV results without the other symptoms proves nothing because they are commonly found in healthy people. Again why are you talking about PWME I’m talking about CFS which is not the same thing as ME.
RE Do you really consider the CDC investigation of the Lake Tahoe outbreak as thorough and accurate and that any conclusions drawn by that investigation to be final?
As far as EBV goes yes, read the link that I provided for Heaps.
RE So the successful use of antivirals in improving the quality of life in some PWME is basically a financial conspiracy added to massive ignorance on the part of respected ME/CFS docs like Petersen, Montoya, Kogelnik, Lerner, and Klimas. I don't think so.
If people are improving with taking anti virals they don’t have CFS, because by its definition it cannot be caused by a virus because this is a physical anomaly that proves that they don’t have CFS, both I and Dr Mirza are talking about CFS, not a large collection of viruses that are already known to cause a prolonged fatiguing illness or ME, none of which are CFS. If you don’t find anything disturbing about a Major pharmaceutical offering 30 million dollars, to researcher to give a drug to treat a virus, that there is no scientific proof causes ME and them not saying to them that they are wasting their time, there isn’t much point in me even commenting. Again why are you talking about PWME because I'm not, and Dr Carruthers has just anounced that ME is not CFS therefore the CCC was wrong, because of this ME/CFS no longer exists!
Without naming to many names or going into too much detail, I can say that I do not have a large amount of respect for the abilities of a large amount of the CFS doctors and researchers, because since 1988 almost all of them have continued to portray CFS as being the same disease as ME which it is not, and by doing this have done as much as the CDC and Wessely school to hide the existence of ME behind the farce of CFS, they have continued to do this despite being told for decades by Dr Hyde that they are not the same, and it is only recently that Dr Carruthes has had the guts to state that he got it wrong and that ME is a different condition to CFS and only makes up 10% of the total, by doing so he admits that the CCC was wrong and that there is no such disease as ME/CFS. None of these Doctors seem to have ever done anything about the issue of misdiagnosis or tried to make the patient community aware of this, again despite Dr Hyde telling them that it was a major problem. Because of the continual failure to address these key issues, research has been continued on mixed cohorts, and the results have been that nothing of much worth has been found by anyone. Something that seems to be universally forgotten is that Dr Daniel Peterson helped with the writing of the Fukuda CFS definition, along with the likes of Simon Wessely and the CDC. This definition is the one that finalized the process of defining CFS as something that can only really be seen as a psychiatric illness, and bans the use of the likes of MRIs SPECT scans and tests for viruses and immunological anomalies. The fact that his name is associated with this definition does not fill me with feelings of respect.
By failing to deal with these key issues, of correctly saying that ME is not CFS and ME is a rare condition and CFS is not a disease it is a meaningless syndrome. And failing to providing accurate information about misdiagnosis, and failing to ensure that research is done on pure cohorts, the majority of these so called CFS experts have only added to the vast amount of confusion and many misdiagnosed people that exist today.
Personally the people that I respect in this area of medicine, are Doctors like Hyde and Mirza who have consistently said that CFS is not a real disease and have helped thousands of people to find what is the true cause of their suffering, and in the case of Hyde has by doing everything he can to find pure cohorts has been able to research these people and come up with information that may prove to be very useful.
RE “I've had enough of trying to answer this post. Your information is outdated, and most of your conclusions illogical.”
If you want to publically prove to people how rude you are that is your problem, not mine!
But don’t bother replying I won’t be reading it!
Anyway I have said all I need to say on this subject, If people in the New York area want to go and see a highly trained up to date endocrinologist and assistant professor of internal medicine who doesn’t believe in the bogus disease CFS, which the people who invented it never said was a disease in the first place, who doesn’t believe that people who have these kinds of symptoms are nuts, and therefore will do everything in his power to find the correct diagnosis, his contact details and articles are all in this thread.