Looking for a good CFS doc in New Jersey/New York City

[Daffodil]

i've had this for 20 years and have seen many specialists. at this moment, i would strongly recommend dr. enlander.

xoxo

 

[rlc]

Hi Justine, don’t know if you have made any decisions on which doctor to go to but I have come across some more comments by Dr Mirza which you may find interesting, see

I have rigorously criticized the concept of chronic fatigue syndrome and the government guidelines (CDC in the USA and NICE guidelines in the UK). I have published comments on these deficient guidelines in the British Medical journal. In this book, there is not even 1 word mentioned about Celiac disease or vitamin D deficiency.


Chronic fatigue syndrome is just a fancy long term for what the patient already tells us: being fatigue for a long time. How can that be a diagnosis? A systematic approach to evaluation of fatigue is necessary. Most patients with chronic fatigue are not being evaluated thoroughly. Nutritional deficiencies, vitamin and mineral deficiencies, pre-diabetes, subtle thyroid diseases, subtle pituitary dysfunction, subtle changes in male and female hormones, are among some causes. Iron deficiency, or iron overload could be a cause. Positional vertigo, peripheral neuropathy.. etc.



The key is not to fall a victim to outdated laboratory reference ranges. On average, the key lab values in the USA are outdated behind new research by 17 years. Some values are outdated by a half a century.


I have evaluated over 5000 patients with chronic fatigue over the past 20 years, not even one has received the diagnosis of CFS. Chronic fatigue syndrome is a syndrome that has not been thoroughly evaluated.


A systematic approach to human body, with a full knowledge of physiology, metabolism, biological clock, sleep, and nutrition and evaluation of every organ system is the key to diagnosis.


My initial evaluation takes over 75 minutes, initial blood tests include more than 20 tests with more to follow based on initial screening. I challenge all the outdated reference ranges based on new research articles.


This book, despite a good attempt by the author, is just another deficient tool and again, is falling a victim to the dogma of CFS.
http://www.amazon.com/Conquering-Chronic-Fatigue-Americas-Misunderstood/product-reviews/0830732578?pageNumber=2

and


I am still shocked to see people attributing chronic fatigue on the pseudo science of ME/CFS.


I do have 5700 patients in my metabolic office and I treat fatigue as #1 problem and not even once I have used CFS as a diagnostic code. CFS is not even a diagnosis. It just means you have been tired for a long time.


The clinical criteria for the diagnosis of chronic fatigue are extremely deficient on both sides of the Atlantic (USA CDC, UK Nice criteria). By implementing new reference ranges for certain vitamins, nutrients and hormones, including subtle metabolic abnormalities in glucose, mineral and lipid metabolism, including subtle pituitary-thyroid, pituitary-adrenal axes, it is absolutely impossible not to uncover the precise diagnosis of chronic fatigue in every patient.


The subtle metabolic/ endocrine/genetic/ nutritional/circadian/ auto-immune diseases I implement in systematic evaluation of chronic fatigue, usually uncovers 99.9% causes of chronic fatigue and I can prove it.


A patient with CFS is a patient who has not been thoroughly evaluated.
EBV infection and other similar viral illnesses do not cause CFS. They cause a short period of post viral fatigue for 2-3 weeks. EBV antibodies just tell you that you have "kissed" in the past and it is waste of resource and energy. http://www.amazon.com/review/R7UF8U7AM4SDZ

All the best

 

[TheMoonIsBlue]

EBV can not cause CFS?

EBV testing a waste of time and just means you have kissed people?

I must say I totally disagree with most of the things he posted, but most notably the last part.

The MOST common viral illness that triggers "CFS" seems to be mononucleosis, EBV, HHV6a or CMV.

HUNDREDS of posts online of "I got mono and I never got well!!". ..... and most people have been thoroughly tested for all or most od the other things mentioned, and still they continue to have no diagnosis that fits other than CFIDS.

Some people have achieved partial/full remission with antiviral specifically for EBV or another herpes viral infection.

If they were a patient of the doctor you are quoting, they would still be sick since he thinks testing for EBV or Hhv6 is a waste of time.

Dr Martin Lerner would certainly disagree www.cfsviraltreatment.com

As would Dr Montoya, see this page For "Infection associated CFS"

Chronicfatigue.stanford.edu/

EBV and other herpres viruses can be very hard on the immune system and cause many changes in the body in ways we still do not understand.

I think it is scary to insist that just because a persons illness started (seemingly atleast) with sudden viral onset EBV that a person does not have CFIDS and is "misdiagnosed". If a person is tested for every other major illness, nutritional deficiencies, hormonal problems, etc and all are negative......they still dont have CFIDS?

It could be that mono for some was just the straw that broke the camels back and they had other infections (like coxsackie) and the EBV just pushed them over the edge.

That book is just going to do more harm to patients and makes CFIDS seem fake. I know there are doctors who think if you dont have ME with abnormal SPECT then all patients are misdiagnosed.....many doctors disagree.

But what happens when they "pass" all the tests of example, Byron Hyde but still have persistant debilitating exhaustion? And fit the CCC criteria?

Also, if that doctor does not even believe in CFS, how can he say EBV cant cause it!?!

"The pseudo science of ME/CFS"?????? REALLY? He is qualified in what way more than people who have spent decades treating ME patients?

Does he think ME is not real also????

 

[TheMoonIsBlue]

"it is absolutely imposible not to uncover the precise diagnosis of chronic fatigue in each patient"

Umm..... That may be the most arrogant statement I have ever heard made in regards to a physicians absolute faith in their own ability to diagnose ALL patients!

What does this endo know secretly that will lead to proper diagnosis that every ME doctor doesnt know?

If He thinks he can identify the proper cause of chronic fatigue in everyone....I guess everyone here should hop on a plane then.

"A patient with CFS is a patient who has not been thoroughly evaluated"....come on. Some people have seen 30 doctors and had $100,000 in blood work done being evaluated.

 

[heapsreal]

ebv a short illness and ebv antibodies tells you that you have kissed in the past?? What a crock! I wouldnt see this dr mirza, just those comments lets one know her depth of knowledge on cfs is very limited and seems to lean towards the wessely school.

cheers!!!

 

[heapsreal]

Its important to get thoroughly checked out and finding a doc who can do this is great, but to say ebv causes a short illness is wrong. The dubbo studies show that 10% of those infected with ebv and 2 other viruses i cant recall had ongoing illness from these infections. As moon is blue has stated, dr lerner and montoya have got alot of experience showing ebv is more then a 3 week long illness and is treatable with antivirals. EBV might not be the cause of cfs but it is in a percentage of patients and in other patients with low nk function , ebv can reactivate causing ongoing issues.
Those comments about ebv are just wrong.

 

[TheMoonIsBlue]

Yeah the statement that EBV only causes a short period 2-3 weeks of post viral fatigue is really a bizarre thing to say. Has this doctor ever seen a teenager laid up for months with mono?

Also, uh, you dont have to get it from kissing, geeze! "The kissing disease" sounds like something fun, EBV is not!!

The daughter of a friend had mono in high school and was out of school I think for an entire month....and when she did try to go back she actually passed out at school and had to be sent home! I think it was atleast 3 months before she was able to get back to school completely full time. Thankfully, she did completely recover.

I have never known or heard anyone that got a severe case of mono and was totally well again within 3 weeks.

I dont think that EBV or any other herpes virus can necessarily be cured in every case even with long term AV's, because we have seen that some respond to them really well, some partially, and some not at all, but it is certainly worth trying. Many people would probably not be nearly as sick now if treated early on post-mono, hopefully that will change, I think there is a new AV being tested for mono.

Anyways I guess this is off topic, the comments made by this doctor are so out of touch and plain wrong IMO.

 

[rlc]

Hi TheMoonIsBlue, you are completely misreading what Dr Mirza has written!! What Dr Mirza is saying is that once people have recovered from EBV that this can then be followed by a short period of POST viral fatigue of a few weeks, not that the duration of all EBV infections is a few weeks, ever doctor on the planet knows that EBV infections can last for a long time, months even years.

The principle Symptoms of an EBV infection are agreed by every source of virology on the planet to be Fever, sore throat and swollen lymph nodes, if you have a persistent fever you do not have CFS according to the CDC and NICE definitions, which is what Dr Mirza is talking about, and reports from experts in ME and from early ME epidemics state that ME patients have normal to sub normal temperatures, E.G do not show sighs of EBV infection.

The principle route of transmission of ME is through Saliva, which is why almost everybody gets it through kissing!

Other proven scientific facts about EBV are almost everybody on the planet has been infected with EBV, it is estimated that 95% of adults between the age of 35-40 in the USA have been infected.

Having antibodies to EBV does not prove that a patient has EBV, it has been proven long before CFS was invented that people who are 100% healthy can have raised antibodies to EBV often at very high levels, this is mentioned in the first CFS definition.

IgG antibodies often remain present for life in people who have had an EBV in the past,

IgM antibodies which can be an early sign of infection are often found in perfectly healthy people with no sign of infection!

EBNA antibodies which can be a sign of reactivation, are also found in perfectly healthy people and are not a guarantee of reactivation.

The EBV virus stay’s dormant but under control in everybody who has ever had EBV, so doing tests and saying we’ve found EBV virus in someone, does not indicate that it is the cause of someone’s health problems, it is found in at least 95% of people who live in the USA by age forty!

It is also important to note that false positive results for EBV can be caused by many things including Laboratory errors, Influenza, Hepatitis, Cytomegalovirus, Rubella, Varicella, Malaria, Lymphoma, Leukemia, Pancreatic cancer, Rheumatoid Arthritis, serum sickness, and Lupus.

So EBV testing is very unreliable, and a diagnosis is only confirmed, when the patient has raised IgG, and IgM antibodies, has the three principle symptoms, fever, swollen lymph nodes and sore throat, Having a fever rules out CFS! Not only do patients have to have all these findings to have EBV they also have to have elevated white blood cell results and an increased percentage of certain atypical white blood cells. And often elevated liver enzymes, Having any of these results shows that you do not have CFS, because CFS patients according to all definitions do not fail standard blood tests, and these kind of results have not been reported in previous ME epidemics.

Another interesting fact about EBV is that the vast majority of people who get it have no symptoms what’s so ever, or their symptoms are so insignificant that they hardly notice them, it is a small minority that get sever symptoms, it is believed by the scientific community that the reason for this is that patients who develop sever symptoms are already immune compromised in some way before getting the EBV infection. So the belief that people have, that they got EBV then never recovered, proves that EBV is the cause of CFS is not backed up by what the science says, the patients already had something going wrong which made them susceptible to EBV, once EBV is cured E.G. they no longer have a high temperature and white cell counts have normalized. It is the underlying problem that made them susceptible in the first place that is the most likely cause of their problem, most medical conditions will be exasperated by the body having to deal with an EBV infection, plus any patients that have had EBV for a protracted duration are also very likely to have developed a vitamin D deficiency due to being house bound and not getting enough sunlight, and have multiple vitamin and mineral deficiencies due to not eating properly for an extended period of time.

In previous ME epidemics EBV has been suspected it has been tested for and ruled out every time! The CDC own investigation of Lake Tahoe proved that it was not EBV, what was found in previous ME epidemics is that it has an incubation period of 3-6 days, EBV has an incubation period of 40 days, so not only is it impossible that it is the cause of ME, but it is impossible for it to cause a fast moving epidemic of any kind.

Dr Hyde in 25 years of research has found cases of protracted EBV infection wrongly being diagnosed as CFS or ME, he has diagnosed these by a technique called throat washing were samples are taken from the throat if they find high levels of the actual virus it confirms the diagnosis, He has frequently said that the findings of raised antibodies levels for EBV and the likes of CMV and HHV6 are meaningless, and that they are commonly found in healthy people and that there are many illnesses that will cause raising antibody levels to a whole host of these kinds of viruses and it does not mean that these viruses have anything to do with causing the illness!

He has also stated several times that he believes that the reason why viruses like EBV and HHV6 are still being promoted as a cause of ME despite the fact that the scientific evidence disproves this, is because certain individuals and groups own the copyright on tests and treatments for these kinds of viruses, he recounts how he and ten other researchers were offered 30 million dollars in grants by Roache Pharmaceuticals to treat CFS patients with their new anti HHV-6 drug, he was the only one there who told Roache they were wasting their money. See page 7 http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-BHydeConferenceSwedenNov09.pdf Basically people are being offered large amounts of money to treat CFS patients with antiviral drugs, even though the scientific community has shown that these viruses are not the cause! Despite attempts to try and portray HHV6 as somehow being a cause of CFS and some sources have tried to say anti bodies are found in greater numbers in CFS patients then healthy controls, this is not backed up by science 90% of children by the age of two have positive antibody results for it, and as with all other viruses these antibodies are often detectable for life!

It is for all these reasons above that Dr Mirza is right to say that EBV testing is a waste of resources and energy. Patients with EBV have to have the symptoms of it E.G. high fever and raised white cell counts, it’s what EBV does, if a patient has these symptoms then it is perfectly acceptable to run EBV and other viral tests. But having these symptoms and test results mean that the patient doesn’t have CFS! In patients that don’t have the symptoms of EBV it is a waste of time running the tests all you’re going to see is a whole lot of raised antibody levels from previous infections which only means the patient has had it before. E.G. they have been kissed.

What both patients and doctors need to remember is what CFS is! And what ME is.

Dr Mirza is talking about CFS as defined by its definitions, CDC, NICE etc

CFS by its definition is not caused by EBV, all CFS definitions state that having any other known illness that could explain the patients symptoms exclude them from having CFS, having the likes of EBV, CMV, Ross river virus, Lyme disease etc, etc, excludes these patients from having a CFS diagnosis. These diseases have for a long time been known to cause protracted fatiguing illnesses. But they are not CFS. Patients who are properly diagnosed as having any of these viruses should not be diagnosed with CFS and if they have been they are misdiagnosed.

ME has an incubation period of 3-6 days which has been proven in numerous epidemics, all the common viruses that are said to be the cause of ME have long incubation periods and it is impossible for them to have been the cause of ME epidemics!

If you have a look at the work of many of these CFS doctors that are claiming to have success with anti viral treatments, what you find is that they have decided to redefine what CFS is all by themselves and forgotten to mention it. What they are doing is getting together groups of patients that have proven infections with these kinds of viral illnesses then treating them with anti-virals and then proclaiming that they have found the cause of CFS, the point is no patient with one of these proven viral infections has CFS, they have a viral infection. What the majority of doctors do when they find patients with a viral infection is say you do not have CFS you have a EBV or whatever infection and treat accordingly, not falsely claim that EBV is the cause of CFS. These kind of long term viral and in the case of Lyme bacterial fatiguing illnesses, are very common and can be extremely unpleasant for the patient, but they are not CFS.

If patients do have a proven viral infection like EBV and anti viral treatment isn’t curing the problem, it would be prudent to remember that because most people experience no or few effects from common viruses like EBV, the scientific communities believe that some other condition/s is causing some people to have long lasting EBV infections, and finding and treating these conditions along the lines that Dr Mirza is explaining will probably solve the whole problem.

It is because these kind of doctors are treating patients that don’t have CFS or ME, that when many other patients try these antiviral drugs they find they don’t work because they don’t have the virus and are often just getting confused with antibody results that are being misunderstood.

And this is where CFS research slips into the realm of pseudoscience, and if you ever what to find a large amount of pseudo science you will find vast amount of it in so called CFS research! There is nothing scientific about saying that CFS is caused by EBV when by definition it’s not possible, people can’t just go around inventing what they think CFS is, this is not scientific.

By Pseudoscience I mean as defined here http://en.wikipedia.org/wiki/Pseudoscience

CFS started with Pseudoscience, the CDC investigated the outbreak at lake Tahoe, and despite the fact that they were told by a former CDC doctor Dr Henderson that it was probably ME, and then read the previous research on ME going back to 1934, and they knew that this illness was causing AIDS like lesion in the patient’s brains as shown on MRI and causing serious neurological symptoms. They then sat down and wrote out a set of symptoms which failed to include the symptoms of the patients and renamed it CFS. How unscientific can you get! They then completely rewrote the symptoms a few years later so that they were so unspecific it could be a description of hundreds of diseases. How does a disease change its symptoms in the space of a few years?? The truth appears to be that there is no such disease as CFS it is just a meaningless set of symptoms that can be caused by just about anything! That seems to have been invented solely for the purpose of deny and explaining away the existence of the outbreak of a strange illness at Tahoe, that the CDC was under considerable pressure from the press at the time to explain

All CFS research that starts with, We selected a group of patients that fit whichever CFS criteria and then tested them for whatever, guarantees mixed cohorts, and therefore the results are meaningless. Any speculation on what this results means is then indulging in Pseudoscience, it is not based on scientific facts E.G. there no proof that all the patients had the same illness.

The name CFIDS is Pseudoscience, we do not have 100% scientific proof that these patients are immune deficient yet, many studies say they find low NK cells, but results from other studies contradict this, but low NK cells are found in many conditions, from Addison’s to Hemochromatosis, celiac to sleep apnea, none of these illnesses are classified as immune deficient illnesses, even poor sleep causes low NK cells, indulging in speculation on what these findings mean and then naming the disease after it, when the majority of studies that have been done have not ruled out other diseases in the patients is Pseudoscience, a lot more work has to be done before any scientific facts can be established.

The name ME/CFS is pseudoscience, which came about by the writers of the CCC mixing the two conditions up despite being told that they were wrong by Dr Hyde at the time, thankfully this mistake has been corrected in the ICC, but still many people continue to use it.

Stating that PEM is only found in ME is also false it is found in many conditions as is POTS etc.

Almost all the work of the Wessely School and the CDC, is Pseudoscience and ignores any evidence that contradicts them and does not properly define the patient cohort or follow rigorous scientific protocols to find a pure cohort or investigate them for other illnesses.

All the treatments that are proposed for CFS are Pseudoscience, because one there is no scientific evidence that CFS exists, and two none of these claims have been 100% scientifically verified, by this I mean everything from GET, to the lightning process, B12 to fixing blocks in methylation, not a jot of it is proven scientifically to cure beyond a shadow of a doubt. In fact a lot of it has the potential to be extremely harmful to people with other undiagnosed conditions. The main consistent factor in CFS is that there is billions of dollars being made by people selling a large variety of largely useless unscientifically proven cures such as vitamins, herbs, minerals, other supplements, prescription drugs, bogus tests, bogus psychological treatments, books and people setting themselves up as experts in CFS, a disease that there is no scientific proof exists, and by its own definitions is scientifically impossible, and charging exorbitant amounts of money to vulnerable people that they are incapable of curing.

The entire field of CFS is full of pseudoscience, there is basically no hard scientific evidence for anything, especially the existence of CFS, doctors and scientists haven’t even come to a universal consensus on what the symptoms are, all we have is a patch work of poorly funded studies done on mixed cohorts, which give a mass of conflicting results, which researchers and doctors are just speculating on what it all means. This speculation is then endlessly passed on amongst patient groups and people on the internet as if it is an established scientific fact, causing every greater confusion. Until cohorts are selected, and every single possible cause of the symptoms is ruled out along the lines proposed by the likes of Drs Mirza and Hyde and then whatever patients that are left are then intensively studied to find out what is going on, research will continue to go nowhere, luckily there are signs in comments made by researchers recently that imply this is the approach that they want to take.

The reality is that the only scientifically one hundred percent proven fact in the field of CFS is that there are large amounts of sick people and nobody knows why! Everything else is conjecture and unanswered questions and unfinished unproven research. The work has not been done yet!

Research into ME does however have more of a basis in science, but it is very devoid of essential 100% proven scientific facts, what we do have are often very detailed accounts of a mysterious illness causing outbreaks going back as far as 1934, these outbreaks were often studied in detail by highly qualified doctors and their findings are available to be read, these outbreaks often happened in hospitals and were witnessed by multiple doctors. These accounts show an illness that has similar symptom patterns, however some of these outbreaks have very different symptoms and because of the limited technology at the time we do not have scientific proof that they are all the same illness, or that some of them weren’t caused by a disease that has since been discovered by science, it is an assumption to say that they certainly are out breaks of the same disease.

But enough evidence was gathered by 1969 for the WHO to declare ME an official neurological illness. Although this research is now largely ignored it does show some very interesting finding such as the 3-6 day incubation period, patients often had an increase in urinary creatinine , and on two occasions infectious material was given to monkeys who then developed the same illness, and autopsy results showed damage in these monkeys. But because of the refusal in modern times of governments to recognize its existence, further research has not been done, and we therefore do not have the proven science, we have some facts and a lot of unproven speculation as to the true nature of this illness. More work needs doing!!

Three of the most important facts established in the old research that are constantly overlooked are how rare this illness is, and the very localized nature of outbreaks and the large breaks in time before other outbreaks.

If all the patients that ever got ME in all of the 60 plus ME epidemics was added up, the total would be lucky to come to ten thousand, of which the vast majority were cured within a year, most in a matter of weeks, the total of people who still had lasting disability after a year in these 50 years of 60 plus ME epidemics would be lucky if it came to two thousand. ME always was a rare disease.

Recently Dr Carruthers has stated that only 10% of patients out of all the ones diagnosed with CFS actually have ME, which again shows that ME is a rare disease, and means that as the evidence presented by the likes of Drs Hyde and Mirza shows CFS isn’t a real disease that 90% of the estimated 17 million CFS patients in the world have the wrong diagnosis, including 90% of the members of this site! ME outbreaks were always very localized appearing in a small area like a town or a small district, sometimes just in a single building like a convent or army barracks. There would then often be no reports of it for years!

This is shown by the work of Dr Henderson and the CDC in the 1950s, Dr Henderson and other CDC doctors investigated an outbreak of a ME like illness in Florida, they came up with the very accurate prophecy, that any attempt to write a case definition based on what they had found and had been found in similar epidemics in the US by other doctors, because the symptoms were so numerous, unspecific and common to so many other illnesses, that the syndrome they would have invented would have “become a wondrous all-encompassing diagnosis for all manner of illnesses” (unfortunately three decades later the CDC ignored this wisdom, and created a syndrome that is a wondrous all-encompassing diagnosis for all manner of illnesses and called it CFS in 1988) Dr Henderson came to the conclusion that it was probably some kind of hit and run virus that quickly became undetectable, they decided that they needed to investigate the patients as soon as possible after they became infected, and developed protocols for doing this, and alerted the CDC field staff across the entire USA to immediately notify them of any suspected outbreak, and then they waited, and waited and waited, after five years the only outbreak that was report was a very small one in a convent and they were not informed about it until it was too late to investigate. So despite the CDC looking for outbreaks across the entire country only one very small one was report in five years! Dr Henderson ended up working overseas and attempts to investigate suspected ME epidemics seems to have been forgotten. But there are only a small handful of other suspected ME epidemics reported across the entire US from this time until the mid eighties when they started happening in Lyndonville and Tahoe.

The only person in recent times that I know of who has consistently tried to follow correct scientific process in this field is Dr Hyde, who has recognized that not everyone has the same illness, and has realized the importance of pure cohorts and done everything he can to find all other undiagnosed diseases in this group, which has lead him to find about 80% have other known illnesses. He has then studied the remainder and found some interesting results. However without his work being replicated by many other researchers, this is again not 100% proven research therefore not scientific facts, he is human and it is possible that he has missed some other illnesses in the ME group.

So in this entire filed there is almost no actual proven science, the vast majority is Pseudoscience E.G. (Pseudoscience is a claim, belief, or pratice which is presented as scientific but does not adhere to a valid scientific method, lacks supporting evidence or plausability, cannot be reliable tested, or otherwise lacks scientific status) Which is why we have the likes of Dr Lipkin saying that we need to start again with a open mind, carefully select patient cohorts, and using the most rigorous scientific methods and protocols, test these patients with the most advanced technology possible, to see if some actual provable scientific evidence can be found! Because although a lot of people are saying CFS is this and ME is that, and this study means this and this study means that, the reality is almost nothing has been properly scientifically proven! And we have to wait until the science is done before anybody can say that anything is a scientific fact

Going back to Dr Mirza you state “come on. Some people have seen 30 doctors and had $100,000 in blood work done being evaluated.”

Actually Dr Hyde writes about many patients he see’s having spent that kind of money on testing before he sees them, and yet he still finds that they are misdiagnosed, because the other doctors have overlooked something or not run the right tests. I’ve talked to many people here who say they have had every test possible and every time I ask them if they have had such and such tests done and every time the answer comes back no.

But you are missing the essential point of what Dr Mirza is saying, which is

“The key is not to fall a victim to outdated laboratory reference ranges. On average, the key lab values in the USA are outdated behind new research by 17 years. Some values are outdated by a half a century.”

There are hardly any doctors on the planet that are aware of this, I have never seen any CFS or ME doctor including Dr Hyde even mention it. What it means is that people all over the world are being tested for a large number of conditions and because the reference ranges used by the labs are wrong, the results will come back saying that they are normal and the patient doesn’t have the illness, when in reality they do have the illness, which means that patients can spend 100, million on getting every test available done over and over again but the correct diagnosis will always be missed, unless they happen to see a doctor like Mirza who will immediately see that the reference ranges are wrong and the patient actually dose have the disease.

This answers your question “What does this endo know secretly that will lead to proper diagnosis that every ME doctor doesnt know? “

He also says “A systematic approach to human body, with a full knowledge of physiology, metabolism, biological clock, sleep, and nutrition and evaluation of every organ system is the key to diagnosis.” This is very similar to Hyde’s approach.

To his statement

"it is absolutely imposible not to uncover the precise diagnosis of chronic fatigue in each patient"

You replied

Umm..... That may be the most arrogant statement I have ever heard made in regards to a physicians absolute faith in their own ability to diagnose ALL patients!



Actually he said all CFS patients not all patients, As neither you nor I actually know what his complete testing methods are I think it is somewhat presumptuous to declare him arrogant without that knowledge. What he does say is that he can prove it, I.E. he has the patient notes of 5600 patients and the test results and the results of treatment to back it up.

People need to remember that CFS is defined as being a mystery disease with no measurable physical anomalies! It is scientifically impossible for anybody to have a serious physical illness without having measurable physical anomalies; this is why it is so easy to portray CFS as psychological, and why a lot of doctors won’t have a bar of CFS as a real disease. I would have thought that the news that a doctor by running the right tests using the right reference ranges, could find measureable physical anomalies in all CFS patients they have seen, would please people because it proves it is not a psychiatric illness.

I constantly see people criticizing the CFS definitions and complaining that they can’t get tests done, Personally I’m very pleased to see a doctor saying that The CFS definitions are rubbish and that all patients deserve and should have more testing, I’m hoping that he will at some stage publish a complete guide to the testing that he does.

Nowhere in any of his articles has he actually made any reference to ME as defined by the WHO, and so neither I or anyone else knows what his views are, his statements are about CFS and he is certainly not the only doctor to say that CFS doesn’t exist and is just a collection of patients who have had the misfortune to have their correct diagnosis missed.

Because it is a rare and localized phenomenon it is quite possible that Dr Mirza hasn’t had many if any ME patients, as he does do Romberg tests on his patients he would pick up that something is very wrong in these patients, but he certainly wouldn’t label them CFS patients, because CFS patients by definition can’t fail Romberg tests. Dr Hyde dose not officially diagnose patients with ME, he writes on their reports that they have a major acquired brain injury, so that they will be eligible to claim insurance.

It is possible that ME is started by a virus but that it clears but leaves the patients with the kind of subtle anomalies he is finding, and or that these anomalies are triggering a autoimmune response, and that by him discovering and treating these anomalies he is actually fixing ME, who knows, I’m just speculating, but for people to portray him as some kind of enemy of ME when he hasn’t even mentioned it is going a bit too far.

You wrote, “That book is just going to do more harm to patients and makes CFIDS seem fake” I do understand that people are tired and have brain fog, but doctor Mirza has not written a book, he is writing reviews of books published by other people!! Personally I wish he would write a book on the subject I would love to find out more about his methods.

Obviously everyone is entitled to their beliefs, but almost everything said about CFS is just that a belief, there is as yet almost no 100% scientific proof of anything; the work hasn’t been done yet. But there is considerable evidence that correct scientific protocol was not followed when CFS was invented, or has been used to create the definitions of it, it is a scientific fact that the CFS definitions, do not contain adequate testing to rule out even some of the very common disease that can cause the symptoms attributed to CFS, and actually contain instructions that a lot of very important tests should not be done on suspected CFS patients, the majority of CFS patients do not get anything near adequate testing, The CFS definition state that anyone who has any illness that would explain their symptoms E.G. EBV, CMV, Lyme etc cannot have CFS, and it has been scientifically proven that many of the reference ranges used in laboratories throughout the world are wrong and have been proven to be often for decades, and the vast majority of Doctors are unaware of this.

Which is why I have no problem whatsoever in believing Dr Mirza when he says, the CFS definitions are rubbish, CFS does not exist, and a CFS patient is just a patient that hasn’t been properly evaluated, and using the right tests with the right reference ranges will always find the correct diagnosis. Because as CFS doesn’t exist there has to be something else wrong with them, therefore it is findable with the right testing!

All the best

 

[Allyson]

and fatigue is not really the word
if they are going down that road they should at least call it chronic exhaustion
fatigue means vaguely tired which is not vaguely what we feel most the time and which totally exludes the muscle pain and brain fog

 

[TheMoonIsBlue]

Hi rlc,
I wrote a long reply which just totally disappeared.

I really can not type it again, my brain fog is too bad, and your post was about as long as a chapter in "War and Peace"!!!

All I will say is that I still stongly disagree with much of what Dr. Mirza said, as well as his statement that "it is absolutely imposible not to uncover the precise diagnosis of chronic fatigue in each patient"

I find it to be an arrogant statment. That is just my opinion. I also think it is insane to think that if you took 100 patients from this board, for example, that they would all walk away from consulatation from this doctor discovering a hidden secret cause of their "CFS". I also dont believe that so many doctors out there are idiots when it comes to understanding the subtle abnormalities when it comes to hormone and vitamin deficiencies. There are lot of smart doctors, if people are lucky to find them. They understand the complexity of the body and how seemingly subtle defiencies things can cause illness, and how lab ranges are so out dated.

But many people have been through all that sort of testing and see many smart doc and still no one can uncover the reason whey they fell like hell all the time.

If this endocrinologst from NY thinks he had some cutting edge intelligence when it comes to diagnosing all these poor "CFS" patients, he should share his information.
I did take this statement about the pseudo science of ME/CFS to mean he also believes there is no such thing as the organic illness of M.E.

All in all, I totally am fine with disagreeing! And I hope you don't think I was being insulting to you, I was just commenting on what you posted that he said in this book review (And yes, I understand he did NOT write a book, I understood that when I posted my first postm I just was careless with my word, it was his comments he wrote about another book you posted, but that book was he reviewing I have seen before and is....not good lets say)

I know you are passionate about this subject and would never want to try and discourage open, honest and respectful debates about differing opinions.

So....continue on rlc.....it's all cool!

Take Care

 

[TheMoonIsBlue]

I have a major problem with random Doctors saying that CFS does not exist, especially on the Internet where millions of people can see......and the reason for this are: (and I think most poeople will agree with this).....

#1. There are thousands of people bedridden with M.E. who are given a diagnosis of CFS.

So anytime anyone says CFS is not real, they think that Myalgic Encephaolomyelitis is not real.

This leads to people possibly being "sectioned" and put in a hospital. And get sicker. MUCH sicker. Or their doctors tag them with a mental illness. And friends and family think they are making it all up. CFS is not real. Thus ME is not real. So what if you cant move from your bed? Get up....it is all in your head.

And.... since people have died from M.E., I strongly encourage people to never to say CFS is not real, because it is the lay person who clings to that statement, and damages and could kill people with M.E. AND people with unexplained severe illness who have been given a diagnosis of CFS.

AND...... #2..Even people who are "mis-diagnosed with CFS", as you would think, but have no other diagnosis to tell friends, family and doctors other than CFS, people will think they are CRAZY or FAKING because they heard some doctor say "CFS does not exist".

They won't understand that what the doctor is actually trying to say when they say that "CFS is not real or does not exist" is many people with CFS are simply misdiagnosed but genuinely VERY ill, physically very ill, ......they will just think their friend/family member with CFS is a crazy person because they are tagged with this "fake illness" and that there is NOTHING wrong with they physically. That leads to ..........death possibly.

So you see what saying "CFS DOES NOT EXIST" does to real people in the real world?

So I do have major issues with any doctor saying CFS does not exist because #1. It still does not move science foward and #2 IT HARMS ALL PATIENTS who already have disbelieving families and could stop people from receiving disability and all sorts of awful things!!!

Words are powerful and people cling to them when they can use them as weapons to hurt people.

"I heard a doctor say that CFS does not exist. Have you seen a psychiatrist? "

You cant have CFS, it is a fake illness!"

"Oh yeah...I HAVE CFS TOO.....but I still get up and go to work!!!

..........these are examples of what the ordinary lay person think andp possibly will say when they hear a doctor proclaim that CFS does not exist.

REGARDLESS of whether or not you think CFS exists, or you think that all CFS patients are simply misdiagnosed, I for these reasons am TOTALLY against Doctors ONLINE stating that "CFS IS NOT REAL" because it harms all patients who have been given an ME or CFS diagnosis, because they are all GENUINELY ill.....people will not understand that they are genuinely physically ill with something, they will just think they have a bogus fake illness.

 

[heapsreal]

Most people are suppose to have had ebv, in Oslers web it is said that the lake tahoe epidemic showed people with antibodies to ebv and a few years later tested totally negative to ebv, why is this, i think its because our immune system is dysfunctional and is unable to make antibodies to ebv, and it can continue to infect cfs/me people. Dr lerner also mentions lytic infections from ebv, which are parts of the viruses that are able to infect people and give them a chronic mono. Also one can have ebv without getting mono but i think in cfs/me we can get mono from ebv in a chronic form as shown in Dr Lerners research. Im not saying ebv is the cause of me/cfs but i think in many it plays a big part. I also think if one is neg to ebv and is in their 40s, maybe these are the people unable to make ebv antibodies. There are a few people on this forum who arent spring chickens who say they have tested neg to ebv, how is this when every adult is suppose to have been infected with ebv. Theres alot more they dont know about ebv then they do know.

cheers!!!

 

[SOC]

The principle Symptoms of an EBV infection are agreed by every source of virology on the planet to be Fever, sore throat and swollen lymph nodes, if you have a persistent fever you do not have CFS according to the CDC and NICE definitions, which is what Dr Mirza is talking abut, and reports from experts in ME and from early ME epidemics state that ME patients have normal to sub normal temperatures, E.G do not show sighs of EBV infection.

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.

The kinds of rules of thumb you are tossing around apply to healthy people, not people with ME/CFS. Admittedly doctors use those rules of thumb out of ignorance, but that doesn't make them accurate.

CDC and NICE guidelines are not exactly gold standard guidelines for diagnosing ME/CFS.

The principle route of transmission of ME is through Saliva, which is why almost everybody gets it through kissing!

Other proven scientific facts about EBV are almost everybody on the planet has been infected with EBV, it is estimated that 95% of adults between the age of 35-40 in the USA have been infected.

Having antibodies to EBV does not prove that a patient has EBV, it has been proven long before CFS was invented that people who are 100% healthy can have raised antibodies to EBV often at very high levels, this is mentioned in the first CFS definition.

IgG antibodies often remain present for life in people who have had an EBV in the past,

IgM antibodies which can be an early sign of infection are often found in perfectly healthy people with no sign of infection!

EBNA antibodies which can be a sign of reactivation, are also found in perfectly healthy people and are not a guarantee of reactivation.

The EBV virus stay’s dormant but under control in everybody who has ever had EBV, so doing tests and saying we’ve found EBV virus in someone, does not indicate that it is the cause of someone’s health problems, it is found in at least 95% of people who live in the USA by age forty!

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.

Again, you are missing an obvious point. Sure, medicine believes that healthy people can have high antibody titres. Fine. If you have high antibody titres and have no symptoms of EBV, then no worries. 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. 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?

In previous ME epidemics EBV has been suspected it has been tested for and ruled out every time!

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?

The CDC own investigation of Lake Tahoe proved that it was not EBV,

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?

Basically people are being offered large amounts of money to treat CFS patients with antiviral drugs, even though the scientific community has shown that these viruses are not the cause!

Logic fail again. Active herpesvirus infections don't have to be causal in the illness in order for them to be the cause of most of the symptoms. Think about AIDS patients. Their symptoms (and deaths) are not caused by the HIV virus, which is causal in the illness. The terrible symptoms are caused by the opportunistic infections, many of which are.... wait for it... herpesvirus infections.

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.

I've had enough of trying to answer this post. Your information is outdated, and most of your conclusions illogical.

Oops, I couldn't let this one pass:

What they are doing is getting together groups of patients that have proven infections with these kinds of viral illnesses then treating them with anti-virals and then proclaiming that they have found the cause of CFS,

Yeah, right, Drs Petersen, Montoya, Kogelnik, Klimas, etc, etc are claiming they know the cause of CFS. That's news to me. It's probably news to most PWME here at PR. I'm sure it's news to the doctors themselves.

 

[rlc]

Hi TheMoonIsBlue, don’t worry I didn’t think you were insulting me and I’m fine with people disagreeing, sorry to hear you wrote out a long post and that it disappeared, I’ve had that happen before and it’s very frustrating.

I to do not think that anyone should be dismissing ME, as a real disease until we have had the science done 100% properly, at the moment all we have a lot of sick people that nobody has the answer for, and a lot of historical information that unfortunately due to the limited technology at the time is more than a little sketchy, a series of uncoordinated poorly funded research in modern times, that very often seems to have been done on mixed cohorts, and has produced a lot of very contradictory results.

My interpretation of what Dr Mirza is saying in his articles is, that because he is specifically mentioning the CFS criteria of both the CDC and NICE, that he is solely talking about CFS as defined by these criteria, and has not in any article ever mentioned ME as defined by the WHO.

Although I understand where you are coming from when you are saying that people shouldn’t say CFS isn’t real because it may adversely affect ME patients, I have to say I strongly disagree. For these reasons, firstly based on compassion for all people, not just those with ME, Dr Carruthers has just said that only 10% of people who are diagnosed with CFS have ME, so we have 90% of an estimated 17 million people who have been diagnosed with CFS, that don’t have ME, we do have doctors like Hyde and Mirza who have spent many years investigating CFS patients, who say without a shadow of a doubt that CFS is just a collection of patients who haven’t been evaluated properly, and that the right tests will always find the diagnosis, and that they have the notes on all these patients and could prove it in a court of law! We also have the evidence that the CDC invented CFS by ignoring evidence such as failed brain scans shown in Tahoe patients by MRI and a host of other symptoms, they did not follow scientific protocol and should not have invented CFS as it is not based on the evidence that was available. A point that seems to be universally missed is that the CDC never said that CFS was a disease; they said it is a syndrome a group of symptoms of unknown cause! It is the patient community and some doctors and researchers that have ignored this and portrayed CFS as a single disease entity. The rules for ruling out other diseases in the CFS criteria without a shadow of a doubt do not rule out even common diseases that can cause the symptoms attributed to CFS and the only possible outcome is that vast amounts people will have their diagnoses missed.

I have often seen a lot of comment say that people who don’t have ME just have some sort of depression, but as Drs Hyde and Mirza point out a lot of the diseases that are being missed are not only seriously debilitating, and destroy the patient’s lives, they are also frequently fatal if not discovered and treated. A lot of the subtle things Doctor Mirza finds on testing actually indicate fatal diseases. People are dying because of the continual promotion of CFS as a real disease! My view is that the people who don’t have ME and they are by far the majority need to get the help they deserve. And this will never happen while Drs are being told to hand out CFS diagnoses after minimal testing, and CFS is being promoted as a real disease.

Your saying that you don’t think people should say that CFS isn’t a real disease for a variety of reasons. And I agree people shouldn’t just go round saying it isn’t real, and therefore imply that the people are not sick.

But this is not what people Like Drs Mirza and Hyde are saying, there saying CFS isn’t real, But these people are very sick, with a large amount of other known diseases, some of which will be fatal if not cured, and that CFS has to be removed as a diagnosis from medicine, because the false belief that it is a real disease is killing people and destroying peoples life’s in vast numbers! The continual promotion of CFS as a real disease actually harms all ME patients because it means that the misdiagnosed CFS patients are continually being used in research that is supposed to be being done on ME and messing up all the results.

So of course people shouldn’t just say CFS isn’t real, and imply that the patients are malingers or nuts.

The message has to be that CFS isn’t real, but these people are very sick with many different illnesses which will often be fatal, unless discovered, and the sooner CFS is expunged from medicine and people get properly tested the better! And that although the science hasn’t been done yet due to government neglect. We also have a rare illness that only makes up about 10% of the CFS patients that is called ME, this is a serious condition and the people are often very sick, please governments etc fund research into this to find out what is going on. And stop treating everyone as if their nuts and malingerers!

It is actually CFS being promoted as a real disease, and it continually being said to be the same as ME that is causing all the problems you outline, not the other way round. Which is why CFS should not be promoted as a real diagnosis.

CFS by it definition cannot scientifically exists except as a psychiatric condition! This is because it is defined as a disease in which if you find any physical anomalies that explain the patients symptoms then the patient no longer has CFS, which means any researcher who is looking for physical anomalies in CFS patients is kidding themselves, because as soon as they find something that could explain the patients symptoms then the patient by definition no longer has CFS, stupid I know, but that is actually what CFS is, and is defined as. So it becomes like a mirage in the dessert, and as soon as you find anything the patient no longer has CFS. Scientifically it is impossible to have a physical illness that does not have measurable physical anomalies, so the only possibility is that CFS has to be a Psychiatric illness, which is why a large number of doctors say that if CFS is defined as having no physical anomalies then the patients can scientifically only have a Psychiatric illness.

The point that they are missing is that if you test these patients properly and use up to date reference ranges you will find physical anomalies in these patients that show that they have a multitude of known physical illnesses. Being cynical again one could say that by the CFS guidelines actually banning a large number of diagnostic tests for CFS patients, it is a deliberate attempt to stop people finding the physical anomalies in these patients, and exposing that CFS is not real.

This is the real reason why it is so easy to say that CFS patients and therefore ME patients because they are constantly being said to be the same thing, even though they are not, have a psychiatric illness or are malingers, because scientifically it is the only option available, that’s what the CFS definitions say it is, we do have to remember that CFS definitions are written principle by Psychiatrists whose only intention was to portray all these patients as nuts.

So if people can understand that CFS is defined in such a way that it can only be scientifically seen as a psychiatric diseases, it becomes very obvious that no one should be encouraging the use of the term CFS or be wanting it to be given to anyone as a diagnosis. Because CFS by definition means you can only have a psychiatric illness or are faking it. It is the continual promotion of CFS that allows people to get away with, saying that patients are nuts and malingers, and for doctors to think and treat them as if they are, which only adds to suffering of these poor people. It is CFS that allows patients to be sectioned, and because they are not properly tested it won’t just be ME patients this is happening to.

This will not change until CFS is gotten rid of, every patient no matter what is wrong with them should be given their correct diagnosis; CFS is not a correct diagnosis for anyone! Even for people in CFS group who do have psychiatric illnesses like depression, they should be getting the correct diagnosis and treatment, not be given a CFS diagnosis.

People need to realise that by its own definition CFS is a psychiatric diagnosis, and we need to stop it being applied to physically sick people, no matter what is wrong with them. And it isn’t a new psychiatric disease and shouldn’t be given to anyone with a psychiatric illness either.

You say “There are lot of smart doctors, if people are lucky to find them. They understand the complexity of the body and how seemingly subtle defiencies things can cause illness, and how lab ranges are so out dated.

I have to question this statement in relation to CFS and CFS doctors, because there is evidence over the last two plus decades to suggest otherwise, why is it that the doctors in this field have never launched a campaign to try and get the CDC and NICE to change their woefully limited testing requirements? Why is it that the only doctors in this field who have consistently raised the issue of misdiagnosis and the need for extensive testing are Drs Hyde and Mirza? Why are CFS doctors not making the patient community aware of the risk of misdiagnosis? And telling what testing needs doing and what for? Why is it that it is only in the last two years that I have seen any CFS doctors and/or researchers even mention Vitamin D deficiency? Why is it that I have never seen a single CFS doctor or researcher ever mention wrong reference ranges? Why have I never seen any of these CFS doctors and researchers mention what percentage of misdiagnosed patients they find? Why is the testing recommended by Stanfords CFS testing so ridiculously small? see http://chronicfatigue.stanford.edu/overview/diagnosis.html why are disease that should be checked for not on its list? Why does it not have an explanation that the reference ranges for a lot of the tests they recommend are wrong? Why does it have so few tests? Why does it contain ridiculous statements like “If the CBC is abnormal, a ferritin test may be appropriate”? Hemochromatosis which causes all the symptoms attributed to CFS and effects 1 in every 250 Caucasians does not cause an abnormal CBC, and will not be picked up without testing ferrintin! In fact there are no iron tests whatsoever on their list of tests to be done! Why does there list of testing not include Cortisol? Etc, etc, etc. There recommendations for ruling out other disease are just about as bad as the CDCs!

I do hope and pray that this is not the kind of testing they are doing to select a pure cohort for the Montoya, Lipkin study because if it is we are guaranteed a mixed cohort, and the results will only add to the confusion, Lipkin may be brilliant at what he does, but what he does is virology he is not a diagnostician, and if the other new research is also done using such completely inadequate testing, it will be done on mixed cohorts and the results will be a mess! And then we will find that funding will dry up for more research and we will be left in exactly the same mess we have always been!

To give an idea of how big a problem wrong reference ranges are, just with the TSH reference range being wrong, new research shows that the TSH (thyroid) reference range upper limit should be 2.5 not 5.0. It is estimated that about 14 million people in the USA are having their hypothyroid condition missed because the out of date reference range are still being used. See http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm If they do not test people in these new studies using the new correct reference ranges we are guaranteed mixed cohorts!

There is in almost thirty years been no sign that CFS doctors or researchers, with the exception of two, have a complete knowledge of what they’re doing when it comes to finding other diseases in patients diagnosed with CFS, and these so called CFS experts have on the whole completely ignored the entire issue and never made any public statements on it. If the kind of testing that is outlined on the Stanford site is what is going to be done on the patients that are being used in the other new research, they will guarantee mix cohorts, and they will have completely stuffed up the research because of this, and I for one are not going to be very pleased!!!!

All the best TheMoonIsBlue, it is all cool

 

[rlc]

Hi Heaps, RE “in Oslers web it is said that the lake tahoe epidemic showed people with antibodies to ebv and a few years later tested totally negative to ebv, why is this,”

The simple answer is because it didn’t happen, I do not have a copy of Oslers web at hand to see if this is what it says, But the Doctors at Tahoe tested the patients for everything including EBV and CMV the result was that it wasn’t EBV, this is why they rang the CDC, no doctor would ever consider ringing the CDC about EBV, and if they did they be told to stop wasting their time. The CDC then did its own investigation of the Tahoe epidemic, it can be found here http://jama.jamanetwork.com/article.aspx?volume=257&page=2297 what they found was that only 15 out of 134 patients had significantly raised antibodies to EBV, CMV, HSV1 and HSV2, I.E only a tiny minority of the patients had raised anti bodies to EBV, but this could be explained by things like them having it as well or because these results can be found in healthy people anyway. Because the CDC seemed to want to bury what happened at Tahoe if they could have found any way to pin it on EBV, it is more than likely that they would have, but they couldn’t find evidence to say that it was EBV, CMV, HSV1 or HSV2, in fact they proved that 119 out of the 134 patients didn’t have these viruses.

HHV6 could not be tested for in Tahoe patients when it first happened, because it happened in 1984/5 and HHV6 wasn’t discovered until1986, some researchers thought that it could possibly be the cause of the outbreak at Tahoe, and a study was done on the patients in 1992, which found that the majority of the patients had antibodies to HHV6 and this was heralded in some quarters as a major breakthrough. However as more research into HHV6 was done it was found that it is an exceedingly common virus that almost everybody gets, and that the level of anti bodies found in the patients at Tahoe was no more than you would find in any group of healthy people and so the results didn’t mean what people had originally thought. HHV6 has also been found to have an incubation period that is too long for it to be the cause of the ME epidemics which had a 3-6 day incubation period,

RE the research of the likes of Dr Lerner etc, I won’t comment to much on their research except to say that none of this research is 100% proven scientific facts, they are only a unproven hypothesis, and more work needs to be done before anybody can say that this research has any meaning or is correct. Nothing has been proven. People have been trying for decades to say that ME is caused by EBV and every time there has been no proof that this is the case. I think people need to be very mindful of what happened with XMRV, things can look very convincing at first, but when the rest of the scientific community starts examining these theories they very often are proven to be false or the research flawed. It is very rare for this not to happen in all fields of science, and only a very small percentage of research stands up to proper examination.

RE “I also think if one is neg to ebv and is in their 40s, maybe these are the people unable to make ebv antibodies. There are a few people on this forum who arent spring chickens who say they have tested neg to ebv, how is this when every adult is suppose to have been infected with ebv.”

This is easily explained, although all the antibodies can stay at detectable levels in people long after infection, and IgG is the one that normally hangs round the longest, Science has shown that many healthy people who have had a proven EBV infection will after a while have no antibodies at detectable levels including IgG, the older you get the more likely this is to occur, so there is no mystery here it is a very common and normal finding.

All the best

 

[rlc]

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.

 

[SOC]

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.

[my bolding]I imagine that at the root of our disagreement is that you respect only 2 doctors and insist that Dr Hyde's perspective is the only correct one, while I have a great deal of respect for many of the doctors that our helping patients and believe that until we know more about the roots of this illness there will be multiple valid perspectives.

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!

It sounds like our conversation is over.

 

[heapsreal]

Hi Heaps, RE “in Oslers web it is said that the lake tahoe epidemic showed people with antibodies to ebv and a few years later tested totally negative to ebv, why is this,”

The simple answer is because it didn’t happen, I do not have a copy of Oslers web at hand to see if this is what it says, But the Doctors at Tahoe tested the patients for everything including EBV and CMV the result was that it wasn’t EBV, this is why they rang the CDC, no doctor would ever consider ringing the CDC about EBV, and if they did they be told to stop wasting their time. The CDC then did its own investigation of the Tahoe epidemic, it can be found here http://jama.jamanetwork.com/article.aspx?volume=257&page=2297 what they found was that only 15 out of 134 patients had significantly raised antibodies to EBV, CMV, HSV1 and HSV2, I.E only a tiny minority of the patients had raised anti bodies to EBV, but this could be explained by things like them having it as well or because these results can be found in healthy people anyway. Because the CDC seemed to want to bury what happened at Tahoe if they could have found any way to pin it on EBV, it is more than likely that they would have, but they couldn’t find evidence to say that it was EBV, CMV, HSV1 or HSV2, in fact they proved that 119 out of the 134 patients didn’t have these viruses.

HHV6 could not be tested for in Tahoe patients when it first happened, because it happened in 1984/5 and HHV6 wasn’t discovered until1986, some researchers thought that it could possibly be the cause of the outbreak at Tahoe, and a study was done on the patients in 1992, which found that the majority of the patients had antibodies to HHV6 and this was heralded in some quarters as a major breakthrough. However as more research into HHV6 was done it was found that it is an exceedingly common virus that almost everybody gets, and that the level of anti bodies found in the patients at Tahoe was no more than you would find in any group of healthy people and so the results didn’t mean what people had originally thought. HHV6 has also been found to have an incubation period that is too long for it to be the cause of the ME epidemics which had a 3-6 day incubation period,

RE the research of the likes of Dr Lerner etc, I won’t comment to much on their research except to say that none of this research is 100% proven scientific facts, they are only a unproven hypothesis, and more work needs to be done before anybody can say that this research has any meaning or is correct. Nothing has been proven. People have been trying for decades to say that ME is caused by EBV and every time there has been no proof that this is the case. I think people need to be very mindful of what happened with XMRV, things can look very convincing at first, but when the rest of the scientific community starts examining these theories they very often are proven to be false or the research flawed. It is very rare for this not to happen in all fields of science, and only a very small percentage of research stands up to proper examination.

RE “I also think if one is neg to ebv and is in their 40s, maybe these are the people unable to make ebv antibodies. There are a few people on this forum who arent spring chickens who say they have tested neg to ebv, how is this when every adult is suppose to have been infected with ebv.”

This is easily explained, although all the antibodies can stay at detectable levels in people long after infection, and IgG is the one that normally hangs round the longest, Science has shown that many healthy people who have had a proven EBV infection will after a while have no antibodies at detectable levels including IgG, the older you get the more likely this is to occur, so there is no mystery here it is a very common and normal finding.

All the best

Im not saying ebv is the cause of me/cfs, what i am saying is it could have been a trigger for some or a reactivation for some and this could cause issues for these people. What i am also saying is that people could test negative but still have the viruses as their immune system is unable to make antibodies to ebv anymore. I just dont agree that ebv is a benign as the doctor you mention thinks it is. At the start of my cfs i tested positive to ebv igg(supposedly life long antibodies) with elevated lymphocytes, several years on these life long antibodies long longer exist. Also im 41 and have worked in the health industry for over 20 years, if ebv is present in everybody, how do i test negative to ebv when i work in an environment most likely to get EBV. I cant say i have a good immune system as my NK function is very poor. What im really getting at is that they dont know as much about ebv as they think. There is still ongoing studies into the link between ebv and MS. Viral and immune research is ongoing

When it comes to the CDC we dont know how much is true as there has been a potential cover up of cfs/me outbreaks by them or that their investigations were rather sloppy. Have a read of Oslers web which is an account of the cfs outbreaks in the 1980s and how poorly the CDC investigated it, they actually spent more time skiing then seeing patients.

cheers!!!

 

[heapsreal]

I dont understand how a positive to ebv can rule someone out of having ME, ME patients with a compromised immune system would be more prone to viral reactivations, just as it is in other illnesses with compromised immune systems.

I dont think any conculsions can be made about cfs or ME until there are biomarkers to diagnose the illness properly, also multiple illnesses can accompany one patient or have comorbid conditions, so saying a person has anemia for example doesnt mean a person doesnt have cfs/me. Most people agree that the diagnostic criteria for cfs or me arent very accurate at all.