A great starting point for M.E. tests......

[rlc]

Hi San Diego #1, I have had similar experiences with doctors some of them have been truly appalling, the key for me has been to learn that some doctors are very poor quality and to just sack them and get another one and to keep doing this until I found a good one. And to learn as much as I can about medicine myself, you can’t tell if a doctor is good unless you have some idea of the facts, so you can tell if your doctor knows them or not. Personality has nothing to do with it. I have had some terrible doctor’s medical wise who have had lovely personalities. Unfortunately this is not the easiest task when you’re sick, but there are a lot of good medical sites on the net.

The reality is because of the lack of good medicine and science happening in this field, patients need to take a degree of charge over their health they need copies of all their tests and to have some understanding of what they mean and what additional tests may need doing. Another thing I have found important is that if your doctor is referring you to a specialist ask to see a copy of the referral before it is sent, some of my referrals have been unbelievable they may as well have been for a different patient, I then got bad treatment from the specialist, which only made sense afterwards when I found out what the referrals said.

People should also be acutely aware that many of the treatments recommended for CFS are not based on replicated research, it may damage their health, and believing that certain so called facts that have not been replicated prove they have CFS, may be very detrimental to their health and even kill them, if it stops them searching for what is really wrong with them. It shouldn’t be like this people should be able to leave things up to their doctors, but unfortunately many people’s doctors aren’t very helpful. Hopefully the information I have provided will help some people in doing this.

As you say in this field people need to start “thinking outside the box”, my approach in life is, if the answer to a question can’t be found, then don’t keep on looking for the answer, look to see if the original question is right. The question just about everyone is asking is what causes CFS and why can’t we find biomarkers for it after decades of trying?

My approach is to change the question to, is CFS a real disease?

When I look at the science behind it I find it was invented by a small group of individuals at the CDC based on virtually no clinical experience or research, it is a set of symptoms that are also found in hundreds of diseases with instructions not to test for over half of the diseases that cause these symptoms. As all the so called research that some claim to be proof of CFS is based on cohorts of patients who have not had all diseases that cause CFS like symptoms ruled out, there is no proof they had CFS, so there is no science at all.

The conclusion I have come to is that the cause of CFS is a small number of individuals at the CDC, and the reason why people can’t find biomarkers for it is quite simple because you can’t find biomarkers for a disease that does not exists.

There is of course the disease called ME which is different, the hospital reports of the epidemics do show a real illness, people do need to bear in mind though that because of the similarities in symptoms and the short incubation period found in the epidemics it was officially recognized as a disease by the WHO in 1969, this however was a hypothesis awaiting proof that it was a single disease, it is possible that there are several causes although the short incubation periods would imply that the same virus family was involved. Unfortunately if we keep having mixed cohorts in research nobody will ever be able to answer the questions about ME.

However there does appear to be a slight ray of light on the horizon these comments found here give me hope http://forums.phoenixrising.me/index.php?threads/a-dozen-different-diseases-stephen-holgate-calls-for-radical-change-in-me-cfs-research.24763/

Professor Holgate said some researchers new to the field had been shocked by the poor quality of much ME/CFS research, and even commented that some had 'made a career' out of ME/CFS theories that could be shaky.

Finally looks like we have some decent quality scientists getting involved and some of the people who have been involved in this field might soon be getting exposed for making a career out of promoting un-replicated theories.

Hopefully we may be in for some big changes over the next few years??

I hope you find something that will help you to get better when you pull the tests!!

All the best

 

[SanDiego#1]

Hi San Diego #1, I have had similar experiences with doctors some of them have been truly appalling, the key for me has been to learn that some doctors are very poor quality and to just sack them and get another one and to keep doing this until I found a good one. And to learn as much as I can about medicine myself, you can’t tell if a doctor is good unless you have some idea of the facts, so you can tell if your doctor knows them or not. Personality has nothing to do with it. I have had some terrible doctor’s medical wise who have had lovely personalities. Unfortunately this is not the easiest task when you’re sick, but there are a lot of good medical sites on the net.

The reality is because of the lack of good medicine and science happening in this field, patients need to take a degree of charge over their health they need copies of all their tests and to have some understanding of what they mean and what additional tests may need doing. Another thing I have found important is that if your doctor is referring you to a specialist ask to see a copy of the referral before it is sent, some of my referrals have been unbelievable they may as well have been for a different patient, I then got bad treatment from the specialist, which only made sense afterwards when I found out what the referrals said.

People should also be acutely aware that many of the treatments recommended for CFS are not based on replicated research, it may damage their health, and believing that certain so called facts that have not been replicated prove they have CFS, may be very detrimental to their health and even kill them, if it stops them searching for what is really wrong with them. It shouldn’t be like this people should be able to leave things up to their doctors, but unfortunately many people’s doctors aren’t very helpful. Hopefully the information I have provided will help some people in doing this.

As you say in this field people need to start “thinking outside the box”, my approach in life is, if the answer to a question can’t be found, then don’t keep on looking for the answer, look to see if the original question is right. The question just about everyone is asking is what causes CFS and why can’t we find biomarkers for it after decades of trying?

My approach is to change the question to, is CFS a real disease?

When I look at the science behind it I find it was invented by a small group of individuals at the CDC based on virtually no clinical experience or research, it is a set of symptoms that are also found in hundreds of diseases with instructions not to test for over half of the diseases that cause these symptoms. As all the so called research that some claim to be proof of CFS is based on cohorts of patients who have not had all diseases that cause CFS like symptoms ruled out, there is no proof they had CFS, so there is no science at all.

The conclusion I have come to is that the cause of CFS is a small number of individuals at the CDC, and the reason why people can’t find biomarkers for it is quite simple because you can’t find biomarkers for a disease that does not exists.

There is of course the disease called ME which is different, the hospital reports of the epidemics do show a real illness, people do need to bear in mind though that because of the similarities in symptoms and the short incubation period found in the epidemics it was officially recognized as a disease by the WHO in 1969, this however was a hypothesis awaiting proof that it was a single disease, it is possible that there are several causes although the short incubation periods would imply that the same virus family was involved. Unfortunately if we keep having mixed cohorts in research nobody will ever be able to answer the questions about ME.

However there does appear to be a slight ray of light on the horizon these comments found here give me hope http://forums.phoenixrising.me/index.php?threads/a-dozen-different-diseases-stephen-holgate-calls-for-radical-change-in-me-cfs-research.24763/

Professor Holgate said some researchers new to the field had been shocked by the poor quality of much ME/CFS research, and even commented that some had 'made a career' out of ME/CFS theories that could be shaky.

Finally looks like we have some decent quality scientists getting involved and some of the people who have been involved in this field might soon be getting exposed for making a career out of promoting un-replicated theories.

Hopefully we may be in for some big changes over the next few years??

I hope you find something that will help you to get better when you pull the tests!!

All the best

ric- First- Did you get the PC I sent to you a few days ago? 2nd- Have you gone to the Health Rising Website? It is easy to understand, and many experts views are on it. It addresses many more issues. (third.) i am a Reg Dental Hygienist and am always interested in any medical or dental research. There are good and bad Dentist also. The sad thing is most people have no clue when a Dentist does not know what he is doing until they start having problems way down the road. One thing I would also like to ask you is about having any info on Anesthesia if you have Palpitations and possible Diabetes Insipidus. One D. said I have DI-No one else agrees. Says CFID Dr. test was invalid-but will not retest me if I am to have some tests done-where I will need gen anesthesia . Never had a problem before-but that was before diag of Diab Ins and over a year ago. What is the best site to go to for that info? The biggest problem is sometimes you don't know someone is not looking out for your best interest until you are into the procedure. Don't want to go there again. I would prefer you contact me on this by PC if that is OK.

Thanks you for thinking outside the box.

San Diego#1

Thank you ahead of time for all your effort. It is appreciated

 

[snowathlete]

rlc - Some of this will echo what Sushi has already said, but some of the tests that you note as 'missing' from the list of tests I had were not done by KDM because I already had tests on the NHS for them, such as glucose, celiacs or cortisol, thyroid, HIV, Hep, etc. etc. Had I not had these done already, KDM may well have run them. Or maybe not - there has to be a limit because this is the patient paying and it all costs money. At the end of the day, as a specialist having seen thousands of patients, he is going to run the tests that experience and knowledge tell him are the most important given the individual person sat in his clinic. My point is that it's important not to pick apart one person's experience and their post on the net and use it in isolation to judge whether a doctor is running the tests you deem necessary, or not. Such posts are useful but aren't a complete picture and need to be viewed in context. The context for my post that you linked is that it's just my one person's experience.

Regarding reference ranges, although some are out of date in the list I posted, KDM uses several labs and these are just the ranges those labs printed with the results. It doesn't necessarily mean that KDM approves of them or uses them in his review of the results.
In many cases anyway there is not a consensus on lab ranges, certainly not globally at any rate. But It's certainly important not to take a reference range as gospel, and depending on the test and the circumstances, the range can be junk. I agree that it is important to do your own research and satisfy yourself with regards to results and ranges, even if you feel you have a competent doctor.

I don't agree that the tests I've had are not useful for diagnosing or giving indication to what is going on. I have found them very useful. I remember our prior PM that you mention and you expressing your views then, but although I understand that you were trying to be helpful, I don't agree with all of your views. Some of your statements about our PM are inaccurate anyway, as many of the tests you feel I should have had done were done previously. As a general remark though, I think it's quite inappropriate for you to talk about the topics discussed in private messages in this way and I'd ask you to stop it; it isn't good forum etiquette.

For the record, I have found KDM and the testing he provides to be very good. I was back in Brussels recently and paid 60 EUROs to see him; a tiny fee when compared to what many specialists charge. I'm also pleased that KDM has links with Redlabs in Belgium as it increases the chances of the test being useful for my illness, and this is not uncommon practice. Many doctors working in non-established conditions like ours set up labs and develop tests - they have to, else there are no useful tests. And indeed, this is how many (perhaps the majority) of FDA approved tests start life, as non-approved tests that are developed. Personally I am happy these tests are available, and if we had to wait for science to be certain about it all then I'd have to wait for NICE approval which will likely be post-FDA-approval and that is years, if not decades, away. In my view, we're all big boys and girls and can make our own call on whether it's worth it or not. It's an individual decision that each person has to make for themselves, whether running these tests are worth it and where to draw the line, and thats true also for the individual specialist.

 

[SanDiego#1]

rlc - Some of this will echo what Sushi has already said, but some of the tests that you note as 'missing' from the list of tests I had were not done by KDM because I already had tests on the NHS for them, such as glucose, celiacs or cortisol, thyroid, HIV, Hep, etc. etc. Had I not had these done already, KDM may well have run them. Or maybe not - there has to be a limit because this is the patient paying and it all costs money. At the end of the day, as a specialist having seen thousands of patients, he is going to run the tests that experience and knowledge tell him are the most important given the individual person sat in his clinic. My point is that it's important not to pick apart one person's experience and their post on the net and use it in isolation to judge whether a doctor is running the tests you deem necessary, or not. Such posts are useful but aren't a complete picture and need to be viewed in context. The context for my post that you linked is that it's just my one person's experience.

Regarding reference ranges, although some are out of date in the list I posted, KDM uses several labs and these are just the ranges those labs printed with the results. It doesn't necessarily mean that KDM approves of them or uses them in his review of the results.
In many cases anyway there is not a consensus on lab ranges, certainly not globally at any rate. But It's certainly important not to take a reference range as gospel, and depending on the test and the circumstances, the range can be junk. I agree that it is important to do your own research and satisfy yourself with regards to results and ranges, even if you feel you have a competent doctor.

I don't agree that the tests I've had are not useful for diagnosing or giving indication to what is going on. I have found them very useful. I remember our prior PM that you mention and you expressing your views then, but although I understand that you were trying to be helpful, I don't agree with all of your views. Some of your statements about our PM are inaccurate anyway, as many of the tests you feel I should have had done were done previously. As a general remark though, I think it's quite inappropriate for you to talk about the topics discussed in private messages in this way and I'd ask you to stop it; it isn't good forum etiquette.

For the record, I have found KDM and the testing he provides to be very good. I was back in Brussels recently and paid 60 EUROs to see him; a tiny fee when compared to what many specialists charge. I'm also pleased that KDM has links with Redlabs in Belgium as it increases the chances of the test being useful for my illness, and this is not uncommon practice. Many doctors working in non-established conditions like ours set up labs and develop tests - they have to, else there are no useful tests. And indeed, this is how many (perhaps the majority) of FDA approved tests start life, as non-approved tests that are developed. Personally I am happy these tests are available, and if we had to wait for science to be certain about it all then I'd have to wait for NICE approval which will likely be post-FDA-approval and that is years, if not decades, away. In my view, we're all big boys and girls and can make our own call on whether it's worth it or not. It's an individual decision that each person has to make for themselves, whether running these tests are worth it and where to draw the line, and thats true also for the individual specialist.

Why would anyone get so upset when someone is trying to give you a different way of looking at a disease?
I think ric has a valid point.Your right- it is an individual decision-try having an open mind for a change.
All of you that are going to Brussels-If you aren't at least 50% better and you have been going for 2 years,
Something is not working. Don't care how inexpensive your Dr. is.

San Diego#1

 

[rlc]

Hi snowathlete, I would just like to point out that I have not mentioned any personal details from communication between us, and made it clear in my post that I would not, obviously I cannot mention on a public forum details of private communication, but I would suggest that you may like to re read the PCs, you don’t appear to have understood a few things. I have heard from other KDM patients and have similar concerns about what they have said, my comments are not just based on your experience.

RE

Regarding reference ranges, although some are out of date in the list I posted, KDM uses several labs and these are just the ranges those labs printed with the results. It doesn't necessarily mean that KDM approves of them or uses them in his review of the results.

My opinion is that people should know what reference ranges doctors are using, not just assume that they are right. I have when I have mentioned wrong reference ranges in the past had many people say that the CFS specialists must know this, my opinion is that people should not be assuming that these doctors are using the correct reference ranges they should find out because if their assumptions are wrong it may cost them years of suffering or maybe their lives.

Sorry if what I’m about to say comes across as a bit harsh, but it has to be said, there are a small number of people on this forum who have been on it for many years, who do not actually know what reference ranges the CFS specialists’ use, or understand what testing really need to be done. And yet they portray these CFS specialists’ as if they must do all the right tests with the right reference ranges without even having real proof for what they are saying. People come to this forum often with very little medical knowledge and are then being told by some, that these CFS specialists are doing all the right tests and that they know all the right reference ranges, if people believe this information but do not get the right tests done with the right reference ranges and an underlying health condition is missed, the people telling them this are responsible for that persons suffering and possible death. I ask that people stop making assumptions about these kinds of issues and presenting them as facts, please find out the facts first, this is a serious issue with people's health at stake.

The same applies to all the un-replicated science that some people are saying are facts they are not, it is un-replicated and has a good chance of being as faulty as the XMRV theory, which many on this forum convinced themselves and other people was a fact.

People should not be presenting this information as facts, they should not be telling people new to this forum that un-replicated science means something and should not be telling people who have not been tested properly to rule other diseases to take all sorts of supplements. Even something like vitamin C can take decades off the life of someone with undiagnosed Hemochromatosis it dramatically increases iron absorption.

I understand that people are saying these things with good intentions, but they need to understand the potential devastating effects unproven science and advice on supplements can have on people, who have not been tested correctly to rule out other diseases. This site should only be giving emotional support to people and pointing them in the direction of proven medical science of what tests that should be done to rule out other diseases, so that they can ask their doctors to consider doing the tests. Otherwise there is the potential for wrong advice to kill people

Discussing a piece of research is fine as long as it is made very clear that it has not been replicated and therefore may not be true. It should not in any way be presented in a way that people may interpret it as proven research.

RE

I don't agree that the tests I've had are not useful for diagnosing or giving indication to what is going on.

You may not agree but the facts are that things like failed immune function tests can be caused by a large number of diseases. Immune function tests don’t tell you what disease it is.

The idea that patients go to a doctor for a first appointment and pay thousands of dollars for a large number of tests is not sound medical practice, medical testing should be done in stages, from the results that you have posted that you had from KDM, you have failed are vitamin D and Ferritin, high Ferritin can be caused by many diseases the cause should be identified. High Ferritin is not caused by CFS. Initial testing along the lines that Dr Mirza recommends is inexpensive and would have identified these problems, then vitamin D deficiency can be treated and the cause of high Ferritin found, if the patient still has residual symptoms then testing can be done based on the residual symptoms, thereby saving thousands on unnecessary tests. A large number of the tests that you had from KDM can be obtained from the NHS for free, including the important ones that you failed.

I have seen people say that they don’t have to pay much to see him, but they have to pay thousands for the tests, people should however be aware that information lists him as a partner in RED labs which do a lot of the tests, and that he also has his name on patents for tests. Therefore it would stand to reason that it is possible the he is making money from tests. Standard doctors do not make money from the tests they order, therefore there is no possibility of financial incentives influencing what tests are ordered. And before I get accused of it I’m not accusing KDM of any impropriety, just saying that there is a possibility that he makes more from patients then his cheap appointment fees imply.

You may be very happy with your experiences with KDM others have not been, however I think people have the right to be informed of facts, despite many people saying that CFS specialists must be using the right reference ranges nobody has provided any facts to back this up. I have yet to hear of anyone who has been to a CFS specialist who hasn’t had some important omissions in what they have been tested for. The costs that many people are paying to see these specialists is often obscene and is not justified by what they get in return, and many of the tests that are done and theories as to why these tests should be done are not backed by replicated science. The views of many of these CFS specialists is not backed by science it has not been replicated.

Therefore I will continue to urge people to be cautious, as I think that there is far too much information on the web that portrays information around CFS as facts when it isn’t, it hasn’t been replicated and believing it could kill people. Many people are being given and accepting CFS diagnoses based on not having the tests that Dr Mirza recommends, they are not aware that they should be having these tests, I think it is the duty of others to try and make people aware.

If you are happy with what you got and paid for from KDM that is your opinion, personally I wouldn’t go near a doctor who does what he does, that is my opinion.

All the best

 

[rlc]

Hi San Diego #1, sorry I haven’t received a PC from you, I will send you one and try to answer your questions.

I agree most people don’t know that their doctor or dentists is bad until things go wrong. The problem with CFS is doctors can just say CFS patients don’t get cured, some treatments may help, but the treatments are often things that even if they do help a bit, they would also help just about anyone with any illness, but none of this address the important question of is the diagnosis right? A question that may go unanswered for decades until the underlying missed diagnosis Kills the patient. Which is why as so many people with a CFS diagnosis have bad doctors they need to take responsibility for making sure they are tested properly which is very hard when you’re sick,

Talk more by PC

All the best

 

[Sushi]

rlc
I am finding your posts puzzling: this is an ME site not a misdiagnosis site, yet most of your posts (that I recall reading) are about misdiagnosis. Sure, this is something to keep in mind, but it is not the purpose of this site, as I understand it. My thoughts are that we are here to share our knowledge and experience about ME and related conditions and to support each other in coping with this illness.

Since this is not a condition where there are replicated studies proving causation or effective treatment, we are by default entering an experimental realm when we decide to seek treatment for ME.

You wrote:

This site should only be giving emotional support to people and pointing them in the direction of proven medical science of what tests that should be done to rule out other diseases, so that they can ask their doctors to consider doing the tests. Otherwise there is the potential for wrong advice to kill people.

(my bolding)

Your above take on the purpose of this site may not be in sync with those of other members--I think most of us would like to share information on treatments that have or haven't worked for us, tests that have shown abnormalities which indicate treatment possibilities, and to pass on hard won knowledge and experience. Also, how is it your role to say what this site should or shouldn't be doing? It would seem that this is rather is the role of the Board of Directors and the leadership team--though as a community our suggestions are always welcome.

But yes, of course we should have testing to rule out other conditions--many of us have been at this for a very long time and have indeed been thoroughly tested to rule out other conditions. If we have not yet been tested, then yes, we should be tested in light of our symptoms and history.

I have yet to hear of anyone who has been to a CFS specialist who hasn’t had some important omissions in what they have been tested for. The costs that many people are paying to see these specialists is often obscene and is not justified by what they get in return, and many of the tests that are done and theories as to why these tests should be done are not backed by replicated science. The views of many of these CFS specialists is not backed by science it has not been replicated.

Firstly, you wouldn't know what tests specialists have done for individual patients unless they chose to post them. Some have posted test results but few will have posted all their test results--more likely members post just those that raise questions for them. Your "hearing of anyone" is not a very reliable statistic.

We're talking ME here, and...there is no "proven medical science" around the testing and treatment for ME. You are setting up Dr Mirza (who is an endrocrinologist and, from his website, does not test for or treat ME) as the gold standard for appropriate testing for this community. This is your judgement, not an accepted standard. I doubt if you have yourself met Dr. Mirza but he has extremely mixed reviews from his patients. (easy to check online)

Many people are being given and accepting CFS diagnoses based on not having the tests that Dr Mirza recommends,

Again, why Dr. Mirza? A while back it was Dr. Bryon Hyde whom you were recommending--neither of whom treat ME to my knowledge.
Has the research on ME been replicated? In some cases yes, but in most cases no as no one has give this niche of the medical community the millions of dollars necessary to do so. However, listening to the interviews where Llewellyn King interviews prominent ME researchers and clinicians gives us a lot of hope--subsets of patients are responding and getting better.

And, as many of these researchers and clinicians have stressed, identifying subsets has become extremely important in predicting response to different types of treatment.
Are we going to wait for those very big bucks necessary to replicate some of the recent fascinating research? Well, we may not live long enough.
Sushi

 

[rlc]

Hi Sushi, this is not an ME site it is a ME/CFS site, ME is a neurological and muscular illness as described in the epidemics from which the name comes from, and as defined by the WHO. ME is not the fatigue based illness described by the CFS and ME/CFS criteria, CFS is just a collection of common symptoms found in hundreds of illnesses, with instructions to only test for under half of them, invented by the CDC based on virtually no research or clinical experience it is not a disease, therefore you can’t combine ME and CFS symptoms and say that it is a disease and call it ME/CFS.

ME has always been a rare disease, the total number of people recorded effected in the 60 plus epidemics since 1934 would be lucky if it totaled 10,000 people the majority of these people made full recoveries.

The point is that most people who think they have ME believe this based on the wrong information that it is just another name for CFS, or that what is being described as ME/CFS is the same as ME, this is not true.

If people don’t have ME which is a rare neurological and muscular disease, there is no CFS or ME/CFS so they must have some other illness and with correct testing they can often have the cause of their illness diagnosed and often successfully treated.

The overwhelming majority of people that have posted on this site report not even having had basic testing for common diseases that cause CFS like symptoms done, I’m endlessly telling people that they need to get tested for things like celiac, Hemochromatosis and vitamin D tested etc, etc, I personally know of seven people in the area I live who have lost years of the lives believing what doctors told them, that they had CFS, who have found out later that they have been misdiagnosed and suffered needlessly, the majority of these people had diseases that would have killed them if the right diagnosis had not been found in time.

The point that I’m trying to get across to people is that there is a very large chance that their belief that they have ME is not true and that nobody should be thinking that they do have it based on the symptoms in the CFS and ME/CFS criteria, they need to get tested for every possible disease that could explain their suffering. Even if people do have ME they still need to be tested to rule out other diseases, people can have more than one illness!

I have no affiliation with Dr Mirza or Hyde the only reason why I post information that they provide about testing is because they are the only ones providing this information, however these are not just Dr Mirza and Hydes theories as I have shown by posting links to scientific information that backs what they are saying, I wish there was more doctors providing this kind of information, if one of the prominent CFS doctors was putting out good lists of what to test for I would be posting these as well, however the testing recommended in the CCC, for the new ICC and the iacfs primer etc all fail to mention important tests to rule out other diseases and make no mention whatsoever about using up to date reference ranges.

All I’m trying to do is to make people aware that there is a good chance that they are misdiagnosed and provide some information on testing that may help people. I wish that I didn’t have to keep doing this over and over again, I have asked PR both under cort and the new leaders if they would put warnings about misdiagnosis in places where everyone could see it, and provide info on tests and reference ranges that people should know, I have provided information for this, however I have been consistently ignored or told that they are too busy.

The reason I’m saying that people need to be far more careful about telling people to take supplements, is that in reality most people have not been tested for all the diseases that could be making them sick, therefore there true diagnosis or diagnoses is not known. Almost every supplement that is being recommended by people will have a disastrous consequence when taken by people with certain diseases, they also can have bad interactions with other supplements and prescription drugs, there is a very strong risk of people being killed or suffering permanent damage from taking supplements’ that people are recommending without full knowledge of the persons medical condition. Medicine is extremely complicated and unless someone is medically qualified they should not be giving treatment advice.

Any decent doctor would be appalled by a lot of the advice given on this forum

It also seems to have escaped everybody’s attention including the people who run this site that it is against the sites rules to give medical advice!!

Firstly, you wouldn't know what tests specialists have done for individual patients unless they chose to post them. Some have posted test results but few will have posted all their test results--more likely members post just those that raise questions for them. Your "hearing of anyone" is not a very reliable statistic.

Actually I do talk to people who have absolutely nothing to do with this forum and a very large amount of my views on what CFS doctors test for is based on information that they themselves have provided, such as the testing they did in the final XMRV research the testing recommended by the ICC and the IACFS the testing recommended by Stanford and numerous other sources all of which omit important tests and make no mention whatsoever about of out of date reference ranges. It’s all there in black and white what tests they think should be done and what they think should be done is flawed.

I would also like to point out that you can’t say that you think that I don’t have all the knowledge on what CFS doctors test for so I can’t say that they don’t do important tests and use the right reference ranges, but it is OK for other people who don’t appear to have even read the information that the CFS specialists have provided on what they tests for, and compared it to what Dr MIrza is saying, to say we don’t know what the CFS specialists test for, but they must be doing all the tests that Dr Mirza does with the right reference ranges, this is illogical, not reliable, and not a statistic.

You are setting up Dr Mirza (who is an endrocrinologist and, from his website, does not test for or treat ME) as the gold standard for appropriate testing for this community. This is your judgement, not an accepted standard.

No I am not, I’m saying hey guys there is a doctor here that is saying if you do these tests with these reference ranges then there is a good chance of finding out what is wrong with you, I have checked out what he says about these tests and reference ranges and the science backs it up. So if you want get these tests done and check the reference ranges it may help you, the majority of people say hey thanks for that I will check it out. The only reason why I mention Dr Mirza is because his name is on the article if it had been a different doctors that wrote them I would be mentioning his name, I’m trying to provide people with information that may help some people end their suffering. But instead I’m now have to defend myself from false accusations.

So to summarize.

ME is a rare neurological and muscular disease.

CFS and ME/CFS are not diseases they are collections of symptoms that can be caused by hundreds of diseases.

People need to be tested properly to find the cause of their suffering and if they are lucky it could be very treatable.

The information provided by a very large number of prominent CFS doctors shows that they do not think that it is necessary to do a large number of the tests that other doctors say are essential. And I have never seen a single word out of hundreds of articles from prominent CFS doctors and researchers that even mentions out of date reference ranges.

Un medically qualified people should not be giving treatment advice to people because it has the potential to be extremely dangerous and kill people.

People should be making sure that they are getting all other diseases that could explain their symptoms tested for, if they want to take supplements’ and other medications they should seek out advice on possible complications and interactions from people who are qualified in this area, and not just take advice on face value from unqualified people. It could seriously damage or kill them.

People should not be writing about the large amounts of un-replicated science around CFS as if it is proven scientific facts, it is not! If someone is lead to believe that this un-replicated science around CFS is proven scientific facts, it may lead them to not seek further testing which could lead to an undiagnosed fatal illness remaining undiagnosed and it could kill them.

If people want to believe the un-replicated science about CFS and use themselves as human guinea pigs and take all sorts of unproven supplements and drugs that is there choice, But please don’t tell other people to do it, without proper medical supervision, it could kill people.

If people want to spend fortunes on CFS doctors by all means go for it, but please don’t try and make out that these doctors must do all the right tests and use the right reference ranges when you don’t know it is true, this could have terrible effects on other people’s health.

This is a tread started by Goodness to ME about Dr Mirza’s tests and how useful they had found them, if people chose not to believe what is in Dr Mirza’s articles that is their choice, but could they please leave the people who do want to discuss these articles alone to do it in peace, without constantly trying to down play what Dr Mirza’s is saying, when they have not done the medical and scientific research to fully understand what he is talking about, thank you.

All the best

 

[snowathlete]

SanDiego#1 I'm not happy having my private messages talked about in the public forum, facts about my tests, health or doctor's working practices being misrepresented. I feel I have a right to show my disagreement with these things. As I stated already, I agree that it's important to check reference ranges and not accept lab values. I also agree that it is important to rule out other diseases (which ironically was one of the main reasons why I chose to see KDM) so it isn't about these things that I am upset.

For the record, I've only been having treatment a short while, so I don't expect any improvement yet. Also, although I agree there should be some improvement after a period like 2 years, it does depend on the case how much is good improvement. Even a 25% improvement after 2 years would be well worth it in my case, for instance. But of course I'm hoping for more.

rlc - you divulged the topic of some of our PR and the type of information exchanged. At what point is it out of order? I think this clearly crosses the line. The clue is in the name "PRIVATE messages". I've asked you to not do it again, that is totally reasonable and your reasonable response should be to say sorry and confirm that it wont happen again, to which I would have replied something along the lines of 'no harm done' but instead you try to justify it. I don't think this is acceptable.
I can't find the link to forum rules but I expect they say something about this. Perhaps Kina would be kind enough to comment on the matter.

Do not patronize me. I have understood what you said in the PMs, I just don't agree with you, as I already stated. The only thing not being understood here is you not understanding that you're out of order talking about private messages in the public forum.

I don't want to discuss my test results with you anymore on here, it's off topic, it's a waste of time, and I can't trust you either.

 

[Goodness to M.E.]

'There is no such thing as right or wrong, only thinking makes it so'!

I'm only a nebwie here and when told I had CFS with no tests done to rule anything else out and no substantiation of the diagnosis, I was told to exercise more, CBT and take anti-deppressant, in doing this I became sicker and sicker and am no longer able to work and am housebound. If only I had the Dr Mirza info several years ago at this time. I could have at least jumped up and down and demanded some medical attention. I suggest people have a look at the "Hummingbird' website by Jodi Bassett-HFME and get some real facts about the non-existance of CFS or the other label ME/CFS. CFS is not an illness or disease, just a loose term given to people when lazy doctors cant be bothered undertaking a process of elimination regarding fatigue symptoms.... I will be forever grateful to Ric for the Dr Mirza information as I now know how to manage myself to be the best I can which from the hundreds of posts on this site is not the case for many people who are still trying to get to the bottom of their symptoms.

'If you cant do good, then avoid causing harm'!......which is the oposite to what I'm reading and what I thought this site was all about.

Take care and be kind to each other

 

[Undisclosed]

SanDiego#1 I'm not happy having my private messages talked about in the public forum, facts about my tests, health or doctor's working practices being misrepresented. I feel I have a right to show my disagreement with these things. As I stated already, I agree that it's important to check reference ranges and not accept lab values. I also agree that it is important to rule out other diseases (which ironically was one of the main reasons why I chose to see KDM) so it isn't about these things that I am upset.

For the record, I've only been having treatment a short while, so I don't expect any improvement yet. Also, although I agree there should be some improvement after a period like 2 years, it does depend on the case how much is good improvement. Even a 25% improvement after 2 years would be well worth it in my case, for instance. But of course I'm hoping for more.

rlc - you divulged the topic of some of our PR and the type of information exchanged. At what point is it out of order? I think this clearly crosses the line. The clue is in the name "PRIVATE messages". I've asked you to not do it again, that is totally reasonable and your reasonable response should be to say sorry and confirm that it wont happen again, to which I would have replied something along the lines of 'no harm done' but instead you try to justify it. I don't think this is acceptable.
I can't find the link to forum rules but I expect they say something about this. Perhaps Kina would be kind enough to comment on the matter.

Do not patronize me. I have understood what you said in the PMs, I just don't agree with you, as I already stated. The only thing not being understood here is you not understanding that you're out of order talking about private messages in the public forum.

I don't want to discuss my test results with you anymore on here, it's off topic, it's a waste of time, and I can't trust you either.

snowathlete

We do not have any specific rules around this issue because it falls under general internet etiquette. Generally, one should understand that posts in 'Conversations/PM's' and in private chat rooms are that -- private. One should ask permission of another member before they publicly divulge private information. It's common courtesy.

 

[SanDiego#1]

snowathlete

We do not have any specific rules around this issue because it falls under general internet etiquette. Generally, one should understand that posts in 'Conversations/PM's' and in private chat rooms are that -- private. One should ask permission of another member before they publicly divulge private information. Its common courtesy.

snowathlete

We do not have any specific rules around this issue because it falls under general internet etiquette. Generally, one should understand that posts in 'Conversations/PM's' and in private chat rooms are that -- private. One should ask permission of another member before they publicly divulge private information. Its common courtesy.

Snow- I have no idea what you are talking about. I have never had a PC with you!!!!!!!!
Only complimenting ric on his open mind!!!!!

San Diego#1

 

[snowathlete]

Snow- I have no idea what you are talking about. I have never had a PC with you!!!!!!!!
Only complimenting ric on his open mind!!!!!

San Diego#1

Sorry for any misunderstanding San Diego; that part of my message was directed at rlc, not at you!
I probably should have quoted yours and rlc's posts fully to avoid any confusion.

 

[SanDiego#1]

Sorry for any misunderstanding San Diego; that part of my message was directed at rlc, not at you!
I probably should have quoted yours and rlc's posts fully to avoid any confusion.

Snow- Thanks for the reply- Just didn't understand.

San Diego

 

[Lou]

I entered a search for something (forget what) and came up on this. Whoa, toward what a little hornet's nest this thread turned! Two compelling sides, no doubt, and I find myself on both, for different reasons.

ric 's view: As part of the Lake Tahoe cohort I, too, think the net's been cast too wide, probably muddling a more precise identification and treatment for my particular grouping. No argument there.

Btw, do I remember correctly you saying ME is treatable, that most recover? If so, how so? Pretty interested in that.

And you said ME has a very short incubation; how short, if you know? Is less than an hour after exposure possible?

Re others view: I think you insulted some really good people by implying, no, saying, they could be killing people with their 'advice'. That is such a stretch. Everyone here knows, or should know, the forum is vastly made up with patients and anything learned here should be checked out firsthand before applying.

In fact, the opposite of what you said about these people is more likely the case, that they have greatly helped, perhaps even saved great harm in some cases, by freely sharing their knowledge, experience and warm support. I know I, for one, have received such help, and it didn't cost a thing.

Lastly, not knocking the tests you cited, but in the years here I don't recall one person bidding us goodbye because they suddenly discovered they had iron poisoning, or problems with thyroid, vit d or b 12 deficiency or other diseases you mentioned misdiagnosed. That is not to say I disagree those things should be ruled out.

Probably should have left this sleeping dog sleeping, but by the time I got through this long thread felt invested, found it hard to say nothing.

 

[Stretched]

I entered a search for something (forget what) and came up on this. Whoa, toward what a little hornet's nest this thread turned! Two compelling sides, no doubt, and I find myself on both, for different reasons... .

ric 's view: As part of the Lake Tahoe cohort I, too, think the net's been cast too wide, probably muddling a more precise identification and treatment for my particular grouping. No argument there... .

Probably should have left this sleeping dog sleeping, but by the time I got through this long thread felt invested, found it hard to say nothing.

Me too, Lou...my two cents.

I came down with CFS within a few months following a week's vacation in Lake Tahoe in 1985.
Mine started when jogging, a flu developed and it kept recycling.

Looking back at all the logs (mine) and doing all kinds of research, I think it would have gone away had the correct testing been done at the time (especifically for viral titers, if it was available then).

It progressively got worse over 5 years and I had to retire early. (FWIW, the only thing that did emerge from subsequent testing on my own volition, and costs, was a then active CMV, discovered by a Harvard I.D. doctor.
That was 1990, and he said it was not treatable.)

I don't claim CFS came from this, necessarily.

My hypothesis is that my CFS, and likely many others' developed as a consequence of 'stress' causing whatever
pathogen was dormant to be active and/or setting off the neurological bio-mechanisms that result in the myriad of
symptoms we all experience. (Please see my thread "One CFS?")

IAE, the older and wiser I get the more certain I become about the uncertainties ... ,-)

 

[SanDiego#1]

Me too, Lou...my two cents.

I came down with CFS within a few months following a week's vacation in Lake Tahoe in 1985.
Mine started when jogging, a flu developed and it kept recycling.

Looking back at all the logs (mine) and doing all kinds of research, I think it would have gone away had the correct testing been done at the time (especifically for viral titers, if it was available then).

It progressively got worse over 5 years and I had to retire early. (FWIW, the only thing that did emerge from subsequent testing on my own volition, and costs, was a then active CMV, discovered by a Harvard I.D. doctor.
That was 1990, and he said it was not treatable.)

I don't claim CFS came from this, necessarily.

My hypothesis is that my CFS, and likely many others' developed as a consequence of 'stress' causing whatever
pathogen was dormant to be active and/or setting off the neurological bio-mechanisms that result in the myriad of
symptoms we all experience. (Please see my thread "One CFS?")

IAE, the older and wiser I get the more certain I become about the uncertainties ... ,-)

Stretched- I came down with WHATEVER IT IS- in 1986. I was an athelete. running and then walking 60miles aweek plus yoga and aerobics. Everyone in our office came down with MONO. I was lucky enough after 3 months to have seen an infectious disease Dr. that was doing research with Immune Globulin. He was also treating Aids patients with it. Within a month from the immune Globulin shots I started getting better. I know whatever I had I tested positive for CMV and Epstein Barr and had a low grade fever. Could not think or talk or do anything physical.. I feel now we are in OVERKILL with testing and meds.. I know mine may not have been as complicated as some. However I still have to pace
myself and eat right and still take Immune Globulin. I do understand why people are afraid of it. The synthetic form does not work for most people.. I do have to agree with ric that there may be other things we need to be tested for. However I do know because of the Mono and CMV-my resistance to everything is down. I did get back to walking distances with in 6 mo. But short lived. Started getting fatigue and had to cut way back. I do know now STRESS is a KILLER for me. I can't handle much of it-even in small doses. Have to just get away from it if possible, I definitely think now there is a Neurological component in this malady that years ago they did not recognize .
I do agree with ric there are toher things we need to see outside the box. CFIDS Dr.s don't have all the answers-
or any. I refuse to see another Arrogant Dr. that thinks he is too important to answer any questions without $1000.00
upfront. I am dealing wth aan Infectious Disease Dr. and an Environmental Dr. that are working with me.
TOO BE CONTINUED!!!! REST AND LESS STRESS HELP ME AS MUCH AS ANYTHING!!!!!

San Diego #1
GO RIC!!!!!!!

 

[golden]

Hi Firestormm, RE



Thanks, I have been thinking about put info about reference ranges and tests in a new post, I think it would be good to simplify things a bit and just have a list of tests and reference ranges and pitfalls in diagnosis, I think often people are very sick and get a bit overwhelmed with having to read lots of links before they can understand things, so bits of vital information tend to get missed, it’s just a matter of finding the time to do it.

I agree that many people must find it hard to think that doctors are using different reference ranges, the natural assumption is that a reference range must be based on up to date science and that they must be the same everywhere.

At first I was deeply shocked to find that this is not the case and reference ranges are often different in most labs and many of them are out of date by decades behind modern research. I don’t think people realize what a bizarre and sometimes nasty and sometimes blatantly corrupt world the medical and scientific world can be, and just how much decisions can be based on money and prestige, not caring and good science.

There have even been some cases of drug companies paying doctors to promote drugs, must admit this one about Rituximab raised a few alarm bells http://www.pharmalive.com/roche-pays-20m-settle-whistleblower-lawsuit

Seeing as Roache was involved it made me wonder about some comments Dr Hyde had made, I don’t know if they are true but nobody has sued him.

Before I start I’d like to make it very clear that I am not personally accusing anyone of anything only putting together some information that other sources have provided that is freely available on the internet for people to consider and form their own opinions about.

In this article Dr Hyde says on page 7 http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-BHydeConferenceSwedenNov09.pdf

“The Cause of CFS is Human Herpes Viruses 6 & 7: In June 2008 I was paid by the Swiss pharmaceutical company, ROCHE to attend a symposium on CFS in Baltimore, Maryland. There were well over 100 “eminent” speakers from around the world, all the speakers except for a salaried researcher from the Canadian Government Viral Detection Laboratory in Winnipeg stated they found Human Herpes 6 & 7 in the 70-80% of all CFS patients but not in healthy controls. Now I am under the opinion that the technology for demonstrating HHV 6 & 7 may be under copyright to a USA laboratory. It is also possible they give cash or free travel grants to University researchers who can prove the HHV-CFS association but not to those who do not find this association. It is my belief that the US laboratory which sponsored this Symposium has the copyright of this test. Whether money is changed hands or not, if I am correct, such a symposium with over 100 research papers could ultimately bring in several million dollars or more a year of royalties to this laboratory.

Also, Roche Pharmaceuticals who paid my way along with 10 of the other researchers, one from the Whittemore Peterson Institute, were offering a carrot of 30 million dollars in research grants to the ten researchers and myself who would treat CFS patients with their new Herpes Virus anti-viral. Dr Peterson, the Whittemore- Peterson researcher was one of the ten at this private meeting with me. He too stated that he found conclusive evidence that the cause of CFS was HHV 6 & 7. I was the only invitee who told the Roche representatives that they were wasting their money. If ROCHE had funded the Whittemore Peterson it might have been financial suicide, to then state that the XMRV retrovirus was the cause of CFS.”

Dr Hyde says “In June 2008 I was paid by the Swiss pharmaceutical company, ROCHE to attend a symposium on CFS in Baltimore, Maryland.”

This would appear to me to be the conference http://www.prohealth.com/library/showarticle.cfm?libid=13661 sponsored by the HHV6 foundation, IACFS/ME and CFIDS Association more info on it here http://www.iacfsme.org/Portals/0/pdf/HHV6SatBroch08.pdf

So I thought I’d see if the HHV6 foundation had patents on HHV6. The scientific director of the HHV6 foundation is Dharam Ablashi see http://hhv-6foundation.org/about-us/scientific-director he has lots of patents on HHV6 testing and treatments, he was one of the people who discovered it, it used to be called HBLV see http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=2e8d2bf39f54a277&psj=1&q=dharam+ablashi&tbm=pts

On the HHV6 foundations scientific board you find leading CFS researchers Anthony Komaroff and Jose Montoya http://hhv-6foundation.org/about-us/scientific-advisory-board

Leading CFS doctor Dan Peterson was a past director of the HHV6 foundation http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/chronic-fatigue-syndrome-mecfs-doctors/dr-dan-peterson past president of the IACFS/ME which also sponsored the Baltimore conference and founding member of the WPI. Dan Peterson is also involved in the CFI project http://cfinitiative.org/lead-researchers/ Dan Peterson and Jose Montoya have received grants from the HHV6 foundation http://hhv-6foundation.org/research/grants he is also the founder of the Simmeron Institute http://www.mecfsforums.com/index.php?topic=8210.0 and http://simmaronresearch.com/

Dan Peterson is also listed in this article as a Partner in R.E.D Laboritories along with Kenny de Meirleir http://cfsmirror.blogspot.co.uk/2012/05/profit-and-loss.html

Kenny de Meirleir name is on many patents for tests and treatments related to CFS http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=84f8d273ad12539a&psj=1&q=kenny+de+meirleir&tbm=pts

Many people believe that there is no money in CFS, well be prepared for a bit of a shock R.E.D Laboratories has been in partnership with Hemispherx Biopharma the makers of Ampligen. R.E.D Laboratories were set up with funding from Quandra Invest, the venture capital group of the Gemeentekrediet Bank, a member of the Dexia Banking group, one of the 20 largest banks in Europe. http://www.prnewswire.com/news-releases/red-laboratories-expands-collaborative-clinical-efforts-with-hemispherx-biopharma-inc-on-cfs-76685477.html

R.E.D laboratories have had major financial backers putting millions of dollars into it, obviously hoping to make large amounts of money from what have turned out to be useless CFS tests kits. http://www.siliconinvestor.com/readmsgs.aspx?subjectid=17968&msgnum=650&batchsize=10&batchtype=Previous and http://translate.google.co.nz/translate?hl=en&sl=nl&u=http://www.me-cvs.nl/index.php%3Fpageid%3D6028%26printlink%3Dtrue%26highlight%3Dwetenschappelijke&prev=/search%3Fq%3Dquadra%2Binvest%2BGemeentekrediet%26biw%3D1093%26bih%3D538

http://www.efinancialnews.com/story/2001-08-06/dexia-ventures-takes-red-labs-to-market?ea9c8a2de0ee111045601ab04d673622

Things get a bit confusing because there are two RED labs R.E.D Laboratories NV Belgium and RED Labs USA which became VIP dx the sellers of XMRV tests http://www.cfids.org/xmrv/testing.asp

There is however one very obvious connection Dan Peterson founder of WPI and Partner in R.E.D laboratories.

R.E.D laboratories NV Beligium sold XMRV tests to Europeans in agreement with the WHittemore Peterson Institute (WPI) http://www.prohealth.com/library/showarticle.cfm?libid=15391

Speaking of Hemispherx Biopharma these people have work with them

Daniel Peterson, M.D. Sierra Internal Medicine

Lucinda Bateman, M.D. Fatigue Consultation Clinic

Charles W. Lapp, M.D. Hunter-Hopkins Center, P.A.

Nancy Klimas, M.D. Chronic Fatigue Center

Derek Enlander, MD CFIDS Fibromyalgia & CFS http://clinicaltrials.gov/show/NCT00215813

In the references for the IACFS/ME

Its primer says http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf The IACFS/ME received a $10,000 donation from Hemispherx, the maker of Ampligen® (a possible treatment for ME/CFS), which supported this primer. Charles Lapp is a Hemispherx principal investigator in Ampligen®studies and has a small amount of stock in the company.

Lucinda Bateman has been a principal investigator in Hemispherx Ampligen® studies for 10 years.

Annette Whittemore of XMRV fame set the WPI with Dan Peterson, she also with Kristen Loomis founded the HHV6 Foundation http://www.investinme.org/Annette%20Whittemore.htm

I can’t be sure, but I would imagine when Dr Hyde says

“Roche Pharmaceuticals who paid my way along with 10 of the other researchers, one from the Whittemore Peterson Institute, were offering a carrot of 30 million dollars in research grants to the ten researchers and myself who would treat CFS patients with their new Herpes Virus anti-viral.”

That the Roache herpes anti viral he mentions is probably Valcyte see http://en.wikipedia.org/wiki/Valganciclovir

Kristen Loomis co founder of the HHV6 Foundation got Roach to fund the Stanford Montoya trial research on the use of the Roach anti viral valcyte against HHV6 http://www.investinme.org/Article-065%20HHV-6%20Foundation.htm Roach gave them 1.3 million http://www.sciencedaily.com/releases/2007/01/070108191506.htm

Amongst those doing the research, organised by the HHV6 foundation, done by Jose Montoya who is on the scientific board of the HHV6 Foundation, on the Roach funded trial, of the Roach owned drug (valcyte) on HHV6 which Dharam Ablashi of the HHV6 Foundation has his name on a lot of patents for, is Andreas Kogelnik http://www.prohealth.com/library/showarticle.cfm?libid=12470

Andreas Kogelnik is the president of the OMI (open medical institute) http://openmedicineinstitute.org/about/management/ Open Medicine Clinic, CA president Andreas M. Kogelnik http://www.corporationwiki.com/California/Mountain-View/open-medicine-clinic-inc/45257498.aspx Open Medicine Institute (OMI) consortium president of OMI Andreas M. Kogelnik http://www.corporationwiki.com/California/Mountain-View/open-medicine-institute-inc/45445234.aspx And also open medicine foundation http://www.corporationwiki.com/California/Mountain-View/open-medicine-foundation-inc/45158488.aspx

A, Andreas M Kogelnik has applied for patient for a Quantitative test for bacterial pathogens, and amongst the applicants for these patients Roche Molecular Systems, Inc., F. Hoffman-La Roche Ag and Roche Diagnostics Gmbh,

http://www.google.com/patents/EP1570086A2?cl=enhttp://www.google.com/patents/WO2004053457A3?cl=enhttp://www.google.com/patents/US7718361

Dan Peterson is on the board of the OMI http://openmedicineinstitute.org/about/board/

A very large number of the CFS doctors and researcher are OMI merit Initiative Signators http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

Question where did the money to set up the OMI come from?????????????

The OMIs first priority project is trials of the Roach made drugs Rituximab and Valcyte (Valgancyclovir) http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

Personally I think all that they plan to do, is a waste of time unless they have ruled out other diseases as Dr Mirza recommends, as Dan Peterson is on the board and Nancy Klimas, Jose Montoya and Lucinda Bateman are on the signators list and they were involved in the final XMRV study which used incredibly limited testing to rule out other diseases which I wrote about here http://forums.phoenixrising.me/index.php?threads/a-multicenter-blinded-analysis-indicates-no-association-between-cfs-me-and-either-xmrv-or-pmlv.19420/ I can’t say I’m filled with confidence.

The Open Medicine institute is working with the CDC on the seven site study http://www.cdc.gov/cfs/programs/clinical-assessment/

Should probably be called a three site study

1.Pain and Fatigue Study Center, NY (Dr Benjamin Natelson, contributor to CDC Fukuda CFS definition)

2.Center for Neuro-Immune Disorders, FL (Dr Nancy Klimas)

3.Open Medicine Institute (OMI) consortium: •Open Medicine Clinic, CA (President Dr Andreas Kogelnik)

•Sierra Internal Medicine Associates, NV (Dr Daniel Peterson, contributor to CDC Fukuda CFS definition)

•Fatigue Consultation Clinic, UT (Dr Lucinda Bateman)

•Hunter-Hopkins Center, NC (Charles W. Lapp)

•Richard Podell Clinic, NJ (Dr Richard Podel

Andreas Kogelnik is also the Medical Advisor of PANDORA http://www.pandoraorg.net/Advisors.html so he has potential influence over advocacy as well.

PANDORA appears to be the driving force behind attempts to change government policies by the US CFS advocacy groups which PR has been a part of, such as the coalition 4ME/CFS attempts to change the ICD codes for CFS to be the same as ME, which would effectively make CFS and ME the same disease in the ICD codes and make the CDCs no scientifically provable syndrome CFS a legitimate disease. And the recent attempts to get the US government to use the CCC which has been rejected as wrong by its own principle authors and has a deficient list of tests to do to rule out other diseases.

It has been claimed by people from these US CFS advocacy groups that doctors have been consulted on these plans and have agreed to them. However when I have asked which doctors these are, my questions haven’t even been acknowledged, let alone answered. But it does stand to reason as PANDORA seems to be the driving force behind them that the doctor they would have consulted would be their own Medical Advisor Andreas Kogelnik.

PANDORA has received grants from drug companies

2013 - $5,000 grant from Purdue Pharma.

2012 - $10,000 grant from Purdue Pharma

2012 - $7,500 grant from Hemispherx Biopharma

2007 - $10,000 from Purdue Pharma

2005 - $10,000 grant from Forest Laboratories.

2004 - $5,000 grant from Forest Laboratories.

See http://www.pandoraorg.net/Grants_Received.html

Interestingly Dr Kenneth Friedman is PANDORAS Policy advisor, is also the Treasurer for the IACFS/ME who also along with the HHV6 foundation and CFIDS Association are listed as sponsors of the Conference in Baltimore 2008 that Dr Hyde speaks about. He is also a none voting member of the CFSAC. http://pandoraorg.net/Advisors.html

Interestingly the CFSAC is not quite what I was led to believe. Very interesting article here http://www.occupycfs.com/tag/pandora/

It says

She states

“I filed a FOIA request on July 23rd. On September 20th, I received copies of the letters and emails that nominated the current voting members of the Committee. Here is what I found:



Dr. Gailen Marshall, Chairman of the CFSAC was nominated by Dr. Ronald Glaser. At the time of he submitted this nomination (September 2009), Dr. Glaser was serving as a member of the CFSAC. Dr. Marshall was appointed to the Committee on May 10, 2010.

Dr. Adrian Casillas was nominated by Dr. Gailen Marshall in August 2011 (while Dr. Marshall was serving as a member) and was appointed to the Committee on June 13, 2012

Dr. Dane Cook was nominated by the CFIDS Association in September 2009, and was appointed to the Committee on May 10, 2010.

Dr. Lisa Corbin was nominated by Dr. Ermias Belay of the Centers for Disease Control in August 2011. Dr. Belay first served as the ex officio representative from CDC to the CFSAC several months later in November 2011. Dr. Corbin was appointed to the CFSAC on June 13, 2012.

Dr. Jordan Dimitrikoff was nominated by Dr. Hope Ricciotti, Vice Chair of the Department of Obstetrics and Gynecology at Harvard Medical School in September 2010. He was appointed to the Committee on May 10, 2011.

Dr. Mary Ann Fletcher received multiple nominations over the course of several years. In September 2009, both Dr. Glaser (a member of the CFSAC at the time) and Dr. Fred Friedberg of the IACFS/ME submitted letters in support of her nomination. In September 2010, the Miami CFIDS Support & Advocacy Group nominated Dr. Fletcher, and two individuals also wrote in support. Finally in August 2011, the Miami group nominated her again four individuals wrote in support. Dr. Fletcher was finally appointed to the Committee on June 13, 2012.

Ms. Eileen Holderman was nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on May 10, 2010.

Mr. Steven Krafchick was also nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on July 1, 2010.

Dr. Susan Levine nominated herself to the Committee in September 2009 and was appointed to the Committee on May 10, 2010.

Dr. Ann Vincent was nominated in October 2010 by Dr. J. Michael Miller of the Centers for Disease Control. Dr. Miller was serving as the CDC’s ex officio representative to the Committee at the time. Dr. Vincent was appointed to the Committee on May 10, 2010

Dr. Jacqueline Rose nominated herself to the Committee in August 2011. She was appointed on June 13, 2012, but then resigned several weeks later.

I am struck by the distribution of nomination sources: two members (Dr. Vincent and Dr. Corbin) were nominated by the serving ex officio representative from CDC; two members (Dr. Marshall and Dr. Casillas) were nominated by serving voting members of the Committee; four members (Dr. Cook, Mrs. Holderman, Mr. Krafchick, and Dr. Fletcher) were nominated by CFS organizations; two members nominated themselves (Dr. Levine and Dr. Rose); and the last member (Dr. Dimitrikoff) was nominated by a colleague at Harvard. This does not look random to me. It looks more like a score card with careful selection among the different sources. Consider the 2012 appointees: one successful nomination each from CDC, a Committee member, a CFS organization, and a self-nominee.”



So PANDORA and the CFIDS Association which they are closely connected to are nominating members for the CFSAC and Susan Levine nominated herself, she works with Dan Peterson and Lucinda Bateman on the CFI project http://cfinitiative.org/lead-researchers/

I’m not accusing anyone of anything or saying this is happening, but one could see that there is the possibility that certain people may have a large amount of influence over the CFS advocacy groups and that by these advocacy group nominating certain people to the CFSAC this could then give them considerable influence over government policy on CFS and funds attached to it. And influence over the advocacy groups could also lead to an increased ability to influence the patient’s beliefs. And this could benefit certain other people or organizations.

These links that I have shown are just the tip of the Iceberg it is the same small group of people popping up everywhere and totally dominating the whole field,(how they find time to do any real research is beyond me) everyone who isn’t in line with their views gets ignored like Dr Mirza and Hyde, how many here have even heard of Dr John Richarson and the Newcastle research Group, cause I think all those that think they have ME should read this http://www.name-us.org/DefintionsPages/DefinitionsArticles/Richardson2002Guidelines.pdf he has written a book covering 45 years of research into ME with the Newcastle Research Group http://www.amazon.com/Enteroviral-Mediated-Myalgic-Encephalomyelitis-Syndrome/dp/0789011271

Dr Hyde also gives more detail about this kinds of issues here

http://www.hfme.org/Other/DefinitionBooklet_Sept_2011.pdf page 25

He says

“Viral Cause: Almost all of these possible infectious and toxic sources have been championed as a cause of M.E. and of CFS by one person or a very small group of persons, or a private laboratory, most of them in the USA. Many of these individuals had a patent on the viral process and could potentially reap incredible funds by propagating false pseudoscientific data.

Some believe that one US government health official with his finger on the government funding cash pile, championed EBV for years due to his own fatigue syndrome. Then, when his EBV theory was found to be incorrect, those he funded appear to have blamed the patient of being psychiatric patients. Several of these infectious agents have been championed by private laboratories or university groups, which have patents, attached to the virus or the detection process or the treatment programs and so have used their theory as a potential cash cow. Several of these private labs also advertise a series of expensive complimentary tests and associated speculative and expensive treatment programs. Patient groups with little real knowledge of these infectious groups have been formed and resemble movie star fan clubs and are vociferous in pleading the cause of a particular infectious agent. Some commercial businesses holding patents on specific viral investigation processes even hold world wide conferences in which they pay university professors who can “prove” viral association of their pet virus with any number of illnesses. Such organizations can make it easy to invent proofs to improve one’s CV and university tenure in the “publish or perish academic world”. Some might consider the propagation of some of these infectious theories as possible fraud. One cannot underestimate the potential millions of dollars a private laboratory can recover by promoting these false viral theories. Individuals and companies have grown wealthy on the dissemination of possible false or spurious information about ME. and CFS.”

Obviously I’m not personally accusing anyone of anything, these are Hyde’s words not mine, but like I say no one has sued him, that I know of.

People think there is no money in CFS, this is not true,, were do people think the money for all the CFS research institutes that keep popping up is coming from? These things can cost tens of millions of dollars, and someone or some organisation is putting the money up, in the case of R.E.D Laboratories it is the likes of Quandra Invest, the venture capital group of the Gemeentekrediet Bank, a member of the Dexia Banking group, one of the 20 largest banks in Europe. Venture capital groups are not charities they are in it to make money!

There are millions of desperate people who will pay large amounts of money for anything that they can be convinced will help them. If you do the math, if someone promotes a tests or a treatment for CFS and sells it at $500 to 50,000 people that’s $25,000,000, if they have the patent on the test or treatment they get money every time anyone purchases it no matter where it is brought from. But it doesn’t stop there research institutes often manage to get grants from governments and other corporations, and the patient community often donates large amounts of money, why, when these institutes are often already being bank rolled I don’t know. Maybe it is because there is seldom any transparency going on and potential conflicts of interest are often not being declared. So the patient community never gets to know about the real money side of things.

If you look at these kinds of tests and treatments that are being promoted for CFS, you often find there is no really science behind them they have not been scientifically independently replicated, there is no agreement in the scientific world that these tests have scientific validity. And in cases like XMRV when the scientific community does get interested they turn out to be totally bogus.

The reality is that there is to the best of my knowledge no independently replicated science behind CFS, and there have never been Patient cohorts researched that have had all other diseases properly tested for with up to date reference ranges as Dr Mirza recommends, so there is no proof that any of this research is done on people who have CFS, because CFS is supposed to be diagnosed by excluding all other disease, if this has never been done no CFS patient has ever been found. So no CFS patient can have ever been researched. So there is no science behind CFS at all.

Why does it not occur to people that after over 2 decades of searching for a biomarker for CFS and not one has been found. The reason for the lack of success might be that CFS isn’t real.

There is however a large amount of evidence linking the enterovirus family to ME as in the WHO defined ME that existed before CFS was invented. It was also a rare disease. There are no patents on Enteroviruses so no money to be made. Could this and the smaller number of patients be behind the lack of interest in researching it??

It may seem that I have got slightly of the topic of this tread. But myself and I would imagine many other people have been under the impression for many years that there was no money involved in CFS apart from the very limited funds from governments, this doesn’t from what these links I’ve found appear to be the case.

If people see that large amounts of money are being made and invested in CFS by what is a relatively small group of people, you can see why it might not be in some peoples best financial interests to use Dr Mirza’s testing regime on supposed CFS patents, it has the potential to destroy their market and careers if it leads to everyone getting their correct diagnosis found.

All the best

 

[golden]

Sorry, technical hitch.

This thread i chocked full of info that I must set aside time this week to review it.

Many thanks
Golden