SanDiego#1
SanDiego#1
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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A great starting point for M.E. tests......
- Thread starter Goodness to M.E.
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Sushi
Moderation Resource Albuquerque
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rlc said:
I agree with SanDiego#1 that this is really an oversimplification and that there are a host of viral, infectious, immune and autoimmune things going on in most of us and that they have to be addressed.
Sushi
I agree with SanDiego#1 that this is really an oversimplification and that there are a host of viral, infectious, immune and autoimmune things going on in most of us and that they have to be addressed.
Sushi
SanDiego#1
SanDiego#1
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Also ric needs to know that the majority of people with this malady are probably on the healthiest diets of anyone.
That usually is their first resource. I have been on Gluten free as I was tested intolerant( years) years ago before it became a fad. It has helped. I am open to any new idea a long as someone is not intolerant of everyone else having an opinion. My metabolism was out of whack after I had Mono. I addressed that.
Getting better all the time. Still have setbacks. Most of these people take better care of themselves than the general public.
They look healthy and sometimes test healthy. When that happens with me and I feel something is off- start tracing my own steps or the Dr.
NOTHING IS BLACK AND WHITE. If I don't agree with the Dr. I tell them.
There is a political side to everything !! I do know some of the CFID Dr.do not even communicate with each other
at all as they are so adamant in their beliefs.
UNLESS THEY ARE HELPING ME ALOT IN 6 MO- I AM GONE!!!!!!
San Diego #1
.
roxie60
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I dont think so, they dont sound familiar
Both CMV and HHV6a can cause mononucleosis type illness. If your are testing low-negative for EBV, perhaps it was one of these other 2 herpes viruses that caused your initial mono type infection?
roxie60
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Cant find HHV6 on the Lab Tests Online. Seems HHV1 and 2 are common tests. Is HHV6 an uncommon test?
roxie60
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Can you have a virus that doesn't cause fever? Do these viruses also affect thryroid and adrenals?
No it is not uncommon. But I can't seem to find it on labtestsonline either. ???
I have been tested through Quest and Labcorp several times. It is a common easy test for people with me/cfs. So is CMV. I would just ask your doctor. He/she will surely be able to locate the test in their computer system.
ETA: Did your initial infection have or not have a fever as a symptom? When I had mono, my temperature spiked all the way up to nearly 104. Positive for EBV and HHV6a. I think viruses can do lots of things, including affect the thyroid and adrenals.
http://labtestsonline.org/understanding/analytes/cmv/tab/test
roxie60
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I really dont remember if there was a fever, that was in Jan 1995. I have had low body temp for years so even if i consider i ,ight have low level fever the medicos dont agree since i can feel bad at 98.6.
roxie60
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there is some mention of the other tests in the second para but HHV6 doesnt show up specifically on LTO. did not realize that EBV is HHV4 and chickenpox is HHV3, Ive had both years ago.
http://labtestsonline.org/understanding/analytes/herpes/tab/faq
http://labtestsonline.org/understanding/analytes/herpes/tab/faq
Bluebell
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Me too. When I used to mention to doctors that my normal temp was lower than "average", and so anything that showed up as higher than "average" was actually quite a few degrees above my normal, they'd pay it no creedence, like I was confused or something. Bleurgh!
roxie60
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I find it interesting the temp guage they use in the office is one that goes under the tongue (or in the ear) and in seconds has a temp. Many times I am at 98.6 or just below. But when I take my temp with an automatice under the tongue or the old fashion thermometer they both come in much lower than at the Drs office. I dont get the variations???
Hi Roxie, RE
I
No worries Roxie, I think just about everyone here has had bad experiences with doctors. I think what he is meaning is yes EBV can be a serious illness, I’m sure he knows that care has to be taken interoperating EBV results, but once people are over the infection then they should experience a few weeks of fatigue and then recover, this is what happens with almost everyone on the planet that gets it i.e. billions of people. I think what he is trying to say is that if people don’t recover it is a sign that there is something else going on and that this needs to be found for the patient to recover.
I think the somewhat terse nature of his comments about EBV antibodies is because there have been some in the CFS world promoting the idea that if someone has high titer levels on some of the EBV or other herpes viruses tests like HHV6. This means that they are the cause of CFS. This has no real science behind it, it has been known for decades that perfectly healthy people can have very high titer levels on these tests. And I sense that he is annoyed that some people are saying this, instead of looking for the real reason why people are still sick.
He does after all start the article by saying
“I am still shocked to see people attributing chronic fatigue on the pseudo science of ME/CFS.”
Pseudo science is defined here as http://en.wikipedia.org/wiki/Pseudoscience
“Pseudoscience is a claim, belief, or practice which is presented as scientific, but does not adhere to a valid scientific method, lacks supporting evidence or plausibility, cannot be reliably tested, or otherwise lacks scientific status.[1] Pseudoscience is often characterized by the use of vague, contradictory, exaggerated or unprovable claims, an over-reliance on confirmation rather than rigorous attempts at refutation, a lack of openness to evaluation by other experts, and a general absence of systematic processes to rationally develop theories.”
This is the point That I’m tried to get across earlier, if cohorts of patients haven’t been tested properly to rule out other disease that cause CFS symptoms, then there is no proof that they have CFS, so there is no science behind CFS! Low NK cells don’t prove the existence of CFS they are caused by many disease that aren’t being checked for and something as simple as a lack of sleep. People can’t just do a study on a group of people without ruling out all other disease that can cause CFS symptoms, and say something like that the patient had high titers for a certain virus and say it is proof that the virus is the cause. So people should pay for this test or this treatment. This is pseudo science, “to adhere to valid scientific methods” research need to be independently replicated by others, methodology must be checked, conflicts of interest must be declared, eg do the people doing the study or people closely connected to the study have patents on the viruses, tests or treatments etc. If high Titers are found in perfectly healthy people as well an explanation for this needs to be found etc, etc, etc. before anything can be claimed to be science.
Personally I think that people need to be a bit more skeptical, they should remember XMRV this looked convincing at first, but it was pseudo science, people making claims before it had been replicated and proven, as soon as people tried to apply true science to it, it turned out to be false. And many people lost a lot of money paying for blood tests that in my view should never have been being sold to people before the science had been replicated. Even stranger people risked their lives taking anti retrovirals and claimed to be feeling better, kind of odd as XMRV was just contamination.
The theories about herpes virus and CFS are just that theories, they have not been independently replicated so they are not science, in fact these theories have been studied and reject by other researchers, so it up to people what they decide to do but I advise caution.
The reason why I have time for what Dr Mirza says, is that I have become extremely skeptical of any statements made by anybody in regards to CFS, so I look up science behind any claims to see if they had validity, and sure enough when I looked up the science behind what he is saying it’s all there, the diseases he says should be ruled out do cause the symptoms of CFS, there is science saying that the reference ranges are wrong etc. So because what he is saying is scientifically valid, I do have time for him and do think that more people should be made aware of what he is trying to tell the world, shame that many that could make a difference don’t seem to be listening.
All the best
I
No worries Roxie, I think just about everyone here has had bad experiences with doctors. I think what he is meaning is yes EBV can be a serious illness, I’m sure he knows that care has to be taken interoperating EBV results, but once people are over the infection then they should experience a few weeks of fatigue and then recover, this is what happens with almost everyone on the planet that gets it i.e. billions of people. I think what he is trying to say is that if people don’t recover it is a sign that there is something else going on and that this needs to be found for the patient to recover.
I think the somewhat terse nature of his comments about EBV antibodies is because there have been some in the CFS world promoting the idea that if someone has high titer levels on some of the EBV or other herpes viruses tests like HHV6. This means that they are the cause of CFS. This has no real science behind it, it has been known for decades that perfectly healthy people can have very high titer levels on these tests. And I sense that he is annoyed that some people are saying this, instead of looking for the real reason why people are still sick.
He does after all start the article by saying
“I am still shocked to see people attributing chronic fatigue on the pseudo science of ME/CFS.”
Pseudo science is defined here as http://en.wikipedia.org/wiki/Pseudoscience
“Pseudoscience is a claim, belief, or practice which is presented as scientific, but does not adhere to a valid scientific method, lacks supporting evidence or plausibility, cannot be reliably tested, or otherwise lacks scientific status.[1] Pseudoscience is often characterized by the use of vague, contradictory, exaggerated or unprovable claims, an over-reliance on confirmation rather than rigorous attempts at refutation, a lack of openness to evaluation by other experts, and a general absence of systematic processes to rationally develop theories.”
This is the point That I’m tried to get across earlier, if cohorts of patients haven’t been tested properly to rule out other disease that cause CFS symptoms, then there is no proof that they have CFS, so there is no science behind CFS! Low NK cells don’t prove the existence of CFS they are caused by many disease that aren’t being checked for and something as simple as a lack of sleep. People can’t just do a study on a group of people without ruling out all other disease that can cause CFS symptoms, and say something like that the patient had high titers for a certain virus and say it is proof that the virus is the cause. So people should pay for this test or this treatment. This is pseudo science, “to adhere to valid scientific methods” research need to be independently replicated by others, methodology must be checked, conflicts of interest must be declared, eg do the people doing the study or people closely connected to the study have patents on the viruses, tests or treatments etc. If high Titers are found in perfectly healthy people as well an explanation for this needs to be found etc, etc, etc. before anything can be claimed to be science.
Personally I think that people need to be a bit more skeptical, they should remember XMRV this looked convincing at first, but it was pseudo science, people making claims before it had been replicated and proven, as soon as people tried to apply true science to it, it turned out to be false. And many people lost a lot of money paying for blood tests that in my view should never have been being sold to people before the science had been replicated. Even stranger people risked their lives taking anti retrovirals and claimed to be feeling better, kind of odd as XMRV was just contamination.
The theories about herpes virus and CFS are just that theories, they have not been independently replicated so they are not science, in fact these theories have been studied and reject by other researchers, so it up to people what they decide to do but I advise caution.
The reason why I have time for what Dr Mirza says, is that I have become extremely skeptical of any statements made by anybody in regards to CFS, so I look up science behind any claims to see if they had validity, and sure enough when I looked up the science behind what he is saying it’s all there, the diseases he says should be ruled out do cause the symptoms of CFS, there is science saying that the reference ranges are wrong etc. So because what he is saying is scientifically valid, I do have time for him and do think that more people should be made aware of what he is trying to tell the world, shame that many that could make a difference don’t seem to be listening.
All the best
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
well you gone done it again
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
Hi Gypsy, RE
I wouldn’t be surprised if there were doctors that only run IgG and IgM there are some truly bad doctors out there EA should be run as part of any EBV testing. However a positive result has to be interpreted in relation to the results of the other EBV tests and of course the patient’s symptoms.
There are also as the lab tests online site shows these other tests
There are at least two other antibodies that arise during an EBV infection - an IgA antibody to the EBV viral capsid antigen (EBV VCA-IgA) and an IgG antibody to the EBV early antigen restricted (EA-R IgG). While it is possible to test for these antibodies as part of the EBV diagnostic workup, it is rarely necessary to do so.
A competent doctor should be able to tell if someone has EBV or not, the point that I feel Dr Mirza is trying to make is that if people are not recovering after an EBV infection it is because there is something else going on as well and this needs to be found.
All the best
I wouldn’t be surprised if there were doctors that only run IgG and IgM there are some truly bad doctors out there EA should be run as part of any EBV testing. However a positive result has to be interpreted in relation to the results of the other EBV tests and of course the patient’s symptoms.
There are also as the lab tests online site shows these other tests
There are at least two other antibodies that arise during an EBV infection - an IgA antibody to the EBV viral capsid antigen (EBV VCA-IgA) and an IgG antibody to the EBV early antigen restricted (EA-R IgG). While it is possible to test for these antibodies as part of the EBV diagnostic workup, it is rarely necessary to do so.
A competent doctor should be able to tell if someone has EBV or not, the point that I feel Dr Mirza is trying to make is that if people are not recovering after an EBV infection it is because there is something else going on as well and this needs to be found.
All the best
Hi Gypsy, RE,
I don’t personally know Dr Mirza, I live thousands of miles away and can’t pay for the travel to see him, if I lived in the States I would be on my way to see him now.
You asked ‘Also, are these patients he sees who have a cfs (misdiagnosis in his opinion) just "tired"? CFS to some people DOES mean just tired.”
Correct me if I’m wrong you may not of seen his original articles at the start of this tread, I have noticed that since I first wrote up the information on Dr Mirza’s articles which Goodness to ME has kindly reposted, the links to the first two articles by Dr Mirza have changed and take people to a different page, you can still find the articles by clicking were it says recent responses his articles are on those pages, but to make it easier for people these links take you straight to his articles http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat
As you can see he is clearly talking about CFS as defined by the CDC and NICE guidelines which he is writing to say are extremely flawed, So he is talking about CFS not just tired people. He has obviously read the entire CDC and NICE guidelines and is pulling them to pieces, and pointing out the blatant errors in them. Don’t know if you have read the entire NICE guidelines but its hundreds of pages of mind numbing dribble (in my opinion)
You ask if because he is an Endo does this mean he is just seeing people with endo disorders, he is also an assistant professor of internal medicine which means he has extensive knowledge of most areas of medicine which he can use to diagnose the many different conditions that his patients have.
I to wish he would write a book, hopefully one is on the way? If however you read his other articles there is a lot of information in them on what to test for and what reference ranges to use, but I to would like to see more extensive information. I also wish, as he has stated that he can prove that he can find the right diagnosis in CFS patients, and has never had to give a single patient a CFS diagnosis, that some of these “expert” CFS doctors who are diagnosing people with it every week would take him up on the challenge could be very interesting.
I don’t know what his opinion on ME as in 1969 WHO defined ME, not CFS or ME/CFS is, he has not mentioned it in any articles I’m aware of. I would imagine that as he starts with 75 minute appointments and extensively examines his patients, he would notice the obvious neurological signs found in true ME patients, ME however is not an US term, maybe he would diagnose them with acquired Brain injury, as Dr Hyde does, he does not list them as ME patients on their records. Sorry I just don’t know the answer to that question.
I also cannot answer your other questions I don’t have that information. Maybe if you wrote to him he may provide more details?
All the best
I don’t personally know Dr Mirza, I live thousands of miles away and can’t pay for the travel to see him, if I lived in the States I would be on my way to see him now.
You asked ‘Also, are these patients he sees who have a cfs (misdiagnosis in his opinion) just "tired"? CFS to some people DOES mean just tired.”
Correct me if I’m wrong you may not of seen his original articles at the start of this tread, I have noticed that since I first wrote up the information on Dr Mirza’s articles which Goodness to ME has kindly reposted, the links to the first two articles by Dr Mirza have changed and take people to a different page, you can still find the articles by clicking were it says recent responses his articles are on those pages, but to make it easier for people these links take you straight to his articles http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat
As you can see he is clearly talking about CFS as defined by the CDC and NICE guidelines which he is writing to say are extremely flawed, So he is talking about CFS not just tired people. He has obviously read the entire CDC and NICE guidelines and is pulling them to pieces, and pointing out the blatant errors in them. Don’t know if you have read the entire NICE guidelines but its hundreds of pages of mind numbing dribble (in my opinion)
You ask if because he is an Endo does this mean he is just seeing people with endo disorders, he is also an assistant professor of internal medicine which means he has extensive knowledge of most areas of medicine which he can use to diagnose the many different conditions that his patients have.
I to wish he would write a book, hopefully one is on the way? If however you read his other articles there is a lot of information in them on what to test for and what reference ranges to use, but I to would like to see more extensive information. I also wish, as he has stated that he can prove that he can find the right diagnosis in CFS patients, and has never had to give a single patient a CFS diagnosis, that some of these “expert” CFS doctors who are diagnosing people with it every week would take him up on the challenge could be very interesting.
I don’t know what his opinion on ME as in 1969 WHO defined ME, not CFS or ME/CFS is, he has not mentioned it in any articles I’m aware of. I would imagine that as he starts with 75 minute appointments and extensively examines his patients, he would notice the obvious neurological signs found in true ME patients, ME however is not an US term, maybe he would diagnose them with acquired Brain injury, as Dr Hyde does, he does not list them as ME patients on their records. Sorry I just don’t know the answer to that question.
I also cannot answer your other questions I don’t have that information. Maybe if you wrote to him he may provide more details?
All the best
roxie60
Senior Member
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- Central Illinois, USA
rlc thank you for taking time to explain your interpretation of his positition, much appreciated and I now understand. I'm just feeling at the end of my rope now and have no patience with Drs who dont share my sense of urgency or seem to make unsubstantiated comments (my recent grip is with Dr Lynch saying the A1298C hetero is insignificant (although I heard him kind of back off on this in his latest MTHFR Thyroid video, he says in his practice A1298C seems to be insignificant. For someone who is hetero A1298C +/- and -/- on C677 I still have many of the problems he lists under the A1298C so +/- A1298C cant be INSIGNIFICANT! - as she screams to be heard)
roxie60
Senior Member
- Messages
- 1,791
- Location
- Central Illinois, USA
Does Mirza speculate on if the EBV triggers some other immune system issue that becomes a life long problem left untreted or identified?
Hi Sushi and San Diego,
I think my reply is being taken slightly out of context and over simplified, when I said such as Vitamin D, B12 etc, This is in context with the other Dr Mirza articles in this thread, the etc includes many other diseases such as AI, Thyroid diseases, Hemochromatosis, pituitary disorders, genetic, auto immune, deficiencies insulin resistance etc.
I’m well aware that many people are on healthy diets and taking every supplement under the sun, However what I’m also aware of is that many people are not being tested correctly to find the true cause of their illness and that they are not being tested using up to date reference ranges. People are being diagnosed with CFS by symptoms not on the exclusion of all other possibilities based on modern science.
Of course the likes of EBV and CMV should be tested for using the right tests that are correctly interoperated, but if someone is found to have an active EBV infection they do not have CFS they have EBV. This is the whole point of CFS if any known cause of the patients symptoms are found you can’t have CFS. Which is why CFS is a totally nonsense diagnosis. What Dr Mirza is saying is that if you do the right tests with up to date reference ranges you will always find the cause, CFS does not exist.
Just about everyone on the planet gets EBV and just about everyone recovers, many people don’t even get symptoms from EBV infections. Many people say I got sick with Mono and then I stayed sick so Mono must be responsible, this is an oversimplification. A subtle underlying health problem could have been damaging people’s immune system before they got sick with Mono which is why they got mono so bad in the first place. Subtle underlying health problems can develop after people get mono. The impression that I get from what Dr Mirza is say is this, scientific fact; mono does not make people sick for life. If they remain sick then there is something else going on. If you test for the right conditions using the right reference ranges you will always find what that something else is and can then treat the patient.
What the replicated proven scientific world says is if people have tests that say they have an active infection with EBV, how to interpret these tests is explained here http://labtestsonline.org/understanding/analytes/ebv/tab/test then they have EBV not CFS they may of course have other health problems as well . If the test results show you don’t have an active infection, the levels of the titers on these tests are do not imply that the virus is causing health problems, perfectly healthy people have high titers. So start looking for another cause.
Some people have said that even though the tests for EBV are negative high titers should be seen as proof that EBV is causing illness in the patients. These are people’s theories, they are not backed up by the scientific world and have not been independently replicated by the scientific world. If people chose to believe these theories that is their choice, Dr Mirza is saying don’t, if you are tested correctly for the right conditions using the right reference ranges the true cause can always be found.
So it’s up to individuals to decide what they want to do. I’m trying to make people aware of what Dr Mirza is saying so they have a choice instead of being forced to accept a CFS diagnosis on the basis of incomplete investigations that are being promoted by many in this field.
All the best
I think my reply is being taken slightly out of context and over simplified, when I said such as Vitamin D, B12 etc, This is in context with the other Dr Mirza articles in this thread, the etc includes many other diseases such as AI, Thyroid diseases, Hemochromatosis, pituitary disorders, genetic, auto immune, deficiencies insulin resistance etc.
I’m well aware that many people are on healthy diets and taking every supplement under the sun, However what I’m also aware of is that many people are not being tested correctly to find the true cause of their illness and that they are not being tested using up to date reference ranges. People are being diagnosed with CFS by symptoms not on the exclusion of all other possibilities based on modern science.
Of course the likes of EBV and CMV should be tested for using the right tests that are correctly interoperated, but if someone is found to have an active EBV infection they do not have CFS they have EBV. This is the whole point of CFS if any known cause of the patients symptoms are found you can’t have CFS. Which is why CFS is a totally nonsense diagnosis. What Dr Mirza is saying is that if you do the right tests with up to date reference ranges you will always find the cause, CFS does not exist.
Just about everyone on the planet gets EBV and just about everyone recovers, many people don’t even get symptoms from EBV infections. Many people say I got sick with Mono and then I stayed sick so Mono must be responsible, this is an oversimplification. A subtle underlying health problem could have been damaging people’s immune system before they got sick with Mono which is why they got mono so bad in the first place. Subtle underlying health problems can develop after people get mono. The impression that I get from what Dr Mirza is say is this, scientific fact; mono does not make people sick for life. If they remain sick then there is something else going on. If you test for the right conditions using the right reference ranges you will always find what that something else is and can then treat the patient.
What the replicated proven scientific world says is if people have tests that say they have an active infection with EBV, how to interpret these tests is explained here http://labtestsonline.org/understanding/analytes/ebv/tab/test then they have EBV not CFS they may of course have other health problems as well . If the test results show you don’t have an active infection, the levels of the titers on these tests are do not imply that the virus is causing health problems, perfectly healthy people have high titers. So start looking for another cause.
Some people have said that even though the tests for EBV are negative high titers should be seen as proof that EBV is causing illness in the patients. These are people’s theories, they are not backed up by the scientific world and have not been independently replicated by the scientific world. If people chose to believe these theories that is their choice, Dr Mirza is saying don’t, if you are tested correctly for the right conditions using the right reference ranges the true cause can always be found.
So it’s up to individuals to decide what they want to do. I’m trying to make people aware of what Dr Mirza is saying so they have a choice instead of being forced to accept a CFS diagnosis on the basis of incomplete investigations that are being promoted by many in this field.
All the best