Article: Defining Moments: the Myalgic Encephalomyelitis Definitions Over Time Pt I: From Symptoms T

Article: Defining Moments: the Myalgic Encephalomyelitis Definitions Over Time Pt I:

You can view the page at http://forums.phoenixrising.me/content.php?469-Myalgic-Encephalomyelitis-ME-cfs-definitions-from-Ramsey-Hyde-defining-moments

 

Thanks, Cort!

You end with the statement, "The key task for the co-authors of the ICC is to convince the research community and funders that their definition is worth testing." I wonder about our role here and the role of our advocacy organizations.

 

Hi Cort - interesting article - just a little thing, it's Dr Melvin Ramsay, not Ramsey!

 

Yes, I agree. Thank you Cort! A well thought out piece.

It should not be up the the authors. Ember's concern is well taken. Here is
where our advocacy has failed completely. Our so-called pt advocacy groups
have literally fought against this and undermined these efforts, and
censored and banned anyone who dared object. We are on our own.
(This includes the fake "ME" groups that are still really about CFS and ME/CFS.)

Thanks, Cort!
You end with the statement, "The key task for the co-authors of the ICC is to convince the research community and funders that their definition is worth testing." I wonder about our role here and the role of our advocacy organizations.

 

Thanks, Cort!

You end with the statement, "The key task for the co-authors of the ICC is to convince the research community and funders that their definition is worth testing." I wonder about our role here and the role of our advocacy organizations.

The definition won't have any impact unless researchers can show that it differentiates a different group of patients than does the Fukuda definition. I think one way to do that is simply for researchers who have large enough studies to see how both groups fare; they pluck out those people who meet the ME definition and compare them to the group that meets the Fukuda definition. It would just take doing two analyses.

Since they would get the patients in there by seeing if they met the Fukuda definition you might miss some ME patients who didn't meet the Fukuda criteria but I'll be most do.

My guess is that the NIH will not be particularly interested in paying for something like that but I would think the WPI might try to incorporate the new definition into their studies (since Dr. Mikovits signed it) and the CAA might. The problem is that doing that adds some cost to the studies and these orgs don't have the money to do alot of studies....but it is a start.

 

Hi Cort - interesting article - just a little thing, it's Dr Melvin Ramsay, not Ramsey!

I'm glad someone caught it early - Thanks

 

Cort, I imagine WPI will do it. The CAA has always been anti-ME
and all about CFS/CFIDS. Kim co-signed the Fukuda def and Vernon
co-authored the CDC emperic definition. And with the investment
in the biobank, even for political brownie points they could not get
away with this.
And there is no need for this Fukuda comparison or overlap other than
busy work for the CAA.

--

The definition won't have any impact unless researchers can show that it differentiates a different group of patients than does the Fukuda definition. I think one way to do that is simply for researchers who have large enough studies to see how both groups fare; they pluck out those people who meet the ME definition and compare them to the group that meets the Fukuda definition. It would just take doing two analyses.

Since they would get the patients in there by seeing if they met the Fukuda definition you might miss some ME patients who didn't meet the Fukuda criteria but I'll be most do.

My guess is that the NIH will not be particularly interested in paying for something like that but I would think the WPI might try to incorporate the new definition into their studies (since Dr. Mikovits signed it) and the CAA might. The problem is that doing that adds some cost to the studies and these orgs don't have the money to do alot of studies....but it is a start.

 

My guess is that the NIH will not be particularly interested in paying for something like that but I would think the WPI might try to incorporate the new definition into their studies (since Dr. Mikovits signed it) and the CAA might. The problem is that doing that adds some cost to the studies and these orgs don't have the money to do alot of studies....but it is a start.

I believe that we have a role to play. Phoenix Rising is a member organization of the Coalition 4 ME/CFS, and at a minimum, its Vision needs updating:

As a member of Coalition 4 ME/CFS you will become part of a coalition of organizations that will:

Advocate for a national strategy for ME/CFS;
Lobby for the government and private funds to support needed research;
Advocate for the adoption of the Canadian Consensus Document;
Promote a new name for this illness that is more appropriate and does not trivialize or give misconceptions;
Promote research to advance the understanding of the biological mechanisms of ME/CFS and to identify effective approaches for diagnosis and treatment...

As a peer-reviewed journal article, the ICC isn't like a book, where authors get out and promote. Fred Friedberg notes, "The lead author of the new criteria, Dr. Bruce Carruthers, will be a featured speaker at the IACFS/ME Research and Clinical Conference in Ottawa, Sept. 22-25, 2011 (www.iacfsme.org)." Beyond that, the co-editors have their own busy role. They write:

"It is important to note that the current emphasis must primarily remain a clinical assessment, with selection of research subjects coming later. For this reason the panel is developing Physicians Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge."

Unless I'm mistaken, Dr. Carruthers co-authored the CCC during his first retirement. He's co-editing the ICC during his present semi-retirement, while being involved (to some extent) in the setting up of a clinic for complex diseases in Vancouver. Note the complete lack of remuneration for the ICC project.

I've been told that there's nothing to stop anyone from using these criteria now. If individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria, they could be studied now as a more homogeneous cohort, with or without Feduka.

P.A.N.D.O.R.A. has gone this far: We believe this publication is a historical one. It clearly sends a message to health government agencies in the U.S. and across the globe that it is time for a change and the time is now.

 

I believe that we have a role to play. Phoenix Rising is a member organization of the Coalition 4 ME/CFS, and at a minimum, its Vision needs updating:

As a member of Coalition 4 ME/CFS you will become part of a coalition of organizations that will:

Advocate for a national strategy for ME/CFS;
Lobby for the government and private funds to support needed research;
Advocate for the adoption of the Canadian Consensus Document;
Promote a new name for this illness that is more appropriate and does not trivialize or give misconceptions;
Promote research to advance the understanding of the biological mechanisms of ME/CFS and to identify effective approaches for diagnosis and treatment...

As a peer-reviewed journal article, the ICC isn't like a book, where authors get out and promote. Fred Friedberg notes, "The lead author of the new criteria, Dr. Bruce Carruthers, will be a featured speaker at the IACFS/ME Research and Clinical Conference in Ottawa, Sept. 22-25, 2011 (www.iacfsme.org)." Beyond that, the co-editors have their own busy role. They write:

"It is important to note that the current emphasis must primarily remain a clinical assessment, with selection of research subjects coming later. For this reason the panel is developing Physicians Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge."

Unless I'm mistaken, Dr. Carruthers co-authored the CCC during his first retirement. He's co-editing the ICC during his present semi-retirement, while being involved (to some extent) in the setting up of a clinic for complex diseases in Vancouver. Note the complete lack of remuneration for the ICC project.

Dr. Carruthers has said that there's nothing to stop anyone from using these criteria now. If individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria, they could be studied now as a more homogeneous cohort, with or without Feduka.

P.A.N.D.O.R.A. has gone this far: We believe this publication is a historical one. It clearly sends a message to health government agencies in the U.S. and across the globe that it is time for a change and the time is now.

Good points Ember - the Coalition4MECFS is a natural fit for this and now with 'ME' on the scene I certainly think its mission will need some updating. CFSAC will be important as well as will the CAA, WPI (and PR all by itself). We should all request that the NIH do a comparative analysis of the two definitions - using a variety of laboratory measures. Researchers for years have moaned that the subsets in the Fukuda defn are very likely imperiling research findings.

Now we have a chance to create a cleaner studies; if its true that subsets are messing up research findings thenthere really is no more important issue.

The CDC was supposed to hold an international conference on the definition and never has. Maybe that's good - as they now have to deal with this very different definition supported by a wide swath of the ME research community.

 

Cort, I imagine WPI will do it. The CAA has always been anti-ME
and all about CFS/CFIDS. Kim co-signed the Fukuda def and Vernon
co-authored the CDC emperic definition. And with the investment
in the biobank, even for political brownie points they could not get
away with this.
And there is no need for this Fukuda comparison or overlap other than
busy work for the CAA.

--

In order for the definition to take hold researchers will have to show that it does differentiate out a different group of patients - otherwise why change? I actually see study after study comparing the two groups until that is clearly established. The scientific community needs more than anecdotal evidence - they need statistically rigorous comparisons - that is what will carry the day for ME...

First they have to get money to do the studies.

 

Coalition 4ME/CFS? They have been fighting this and marginalizing
and censoring ME advocates. This is not about ME/CFS or CCC defined.
This has NOTHING to do with ME/CFS, the CAA or CFSAC - the *"Chronic
Fatigue Syndrome" advisory committee. Would not want an ME/CFS
coalition involved as it would defeat the purpose.

It is not necessary to have Fukuda as any comparison. Dr.
Carruthers has said that there's nothing to stop anyone from
using these criteria now. If individuals meeting the International
Consensus Criteria have myalgic encephalomyelitis and should
be removed from the Reeves empirical criteria, they could
be studied now as a more homogeneous cohort, with or
without Fuduka.

In order for the definition to take hold researchers will have to show that it does differentiate out a different group of patients - otherwise why change? I actually see study after study comparing the two groups until that is clearly established. The scientific community needs more than anecdotal evidence - they need statistically rigorous comparisons - that is what will carry the day for ME...

First they have to get money to do the studies.

 

Dr.
Carruthers has said that there's nothing to stop anyone from
using these criteria now. If individuals meeting the International
Consensus Criteria have myalgic encephalomyelitis and should
be removed from the Reeves empirical criteria, they could
be studied now as a more homogeneous cohort, with or
without Fuduka.

To clarify, these were my words, with the words in quotations coming from the ICC. (Given ME impairments, I should be more careful when recollecting or quoting.)

I've edited my original post to read: "I've been told that there's nothing to stop anyone from using these criteria now. If 'individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria,' they could be studied now as a more homogeneous cohort, with or without Feduka."

 

Ember, Sorry the quote did not post. I believe it is accurate. What corrections were made?

"Dr. Carruthers has said that there's nothing to stop anyone from
using these criteria now. If individuals meeting the International
Consensus Criteria have myalgic encephalomyelitis and should
be removed from the Reeves empirical criteria, they could
be studied now as a more homogeneous cohort, with or
without Fuduka."

To clarify, these were my words, with the words in quotations coming from the ICC. (Given ME impairments, I should be more careful when quoting or speaking from recollection. I've edited my original post.)

 

Ember, Sorry the quote did not post.

It posted, Jill. I changed the first few words to avoid inadvertently misquoting Dr. Carruthers.

 

Hi Cort and everyone, regarding this statement

1. The key task for the co-authors of the ICC is to convince the research community and funders that their definition is worth testing." I wonder about our role here and the role of our advocacy organizations.

As far as the role of advocacy organisations in the US goes, to make a major change and get ME properly investigated. There is a massive opportunity that has been over looked for some time, and that is that the CDC has for sometime acknowledged that ME is a different disease to CFS!!!!! On its own web site the CDC quite clearly states this

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

Link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

Because the US advocacy groups have for so long been focused on the now obsolete CCC and ME/CFS and have not been willing to accept that ME is a different disease to CFS, there has been no significant attempt to get the CDC to do anything about researching ME.

Because the CDC has finally publically admitted that ME is not CFS, they legally cannot back out of this now! If the US patients and organisations can get their heads around the fact that ME is not CFS and campaign hard for the CDC to do something about it then there is a real chance that changes can be made!!!

The CDC is not doing what it promotes itself as and is trusted to do by the US government. Centre for disease control and prevention, saving lives, protecting people, saving money through prevention.

To the best of my knowledge putting this brief paragraph on their web site is the only positive thing that the CDC has done about ME since 1988 and I doubt they have any records of whos even got it in the US and have done no research on it that their admitting to.

Their statement about ME that it is associated with well documented outbreaks of disease implies very strongly that it is infectious, which means the cause needs to be found!

They also say that ME has a case definition distinct from CFS, well I think its about time the CDC let everyone know what the ME case definition is.

If the US patient organisations and patients can quickly come to grips with the fact that ME is a different disease to CFS and that ME/CFS no longer exists! And starts campaigning for the CDC and other government agencies to do something about it, and as much effort was put into this as was put into XMRV then there is good chance for success!!

I would recommend that US patients write to every possible news outlet and let them know that ME is not CFS and despite the fact that the CDC recognizes it as a separate disease they are not doing anything to help patients with it. If people Google, contact and the name of any media outlet they want to send information to you can usually find an Email address for them in under a minute.

I would recommend writing to government e.g congress men, senators.

And if the US groups could get really organized than if progress isnt made, then a legal case could be taken against the CDC, legally they are screwed if they say ME exists and dont do anything about it!!!!

The US patients are in a far better position to get a lot done about ME then the people in the UK, because in the UK ME is basically banned as a medical term with the English government using the official secrets act to suppress information on it. But in the US the government isnt suppressing information, it has taken the CDC to the federal courts for misappropriating funds allocated for CFS research and found them guilty, unfortunately it was the CAA who got Bill Reeves protection under the whistle blowers act, which then lead to people being inflicted with the Reeves definition. The US government didnt protect them by lying or using the official secrets act. The problem has always been that for whatever reasons the US groups have brought into the false ideas initially promoted by the CDC about CFS, then they embraced CFIDS and then ME/CFS, theres been virtually no acceptance that there is a separate disease called ME. So groups in the US to my knowledge have never demanded research on ME or shown any real interest in the 50 years of extensive medical research that was done on ME before 1988 I hope now that with the ICC coming out it will lead to a lot of people changing their views. If the US patients can force ME to be accepted as a disease by the main stream medical community in the US, it will then become impossible for the UK to maintain its position and the UK patients will get help as well.

Because of the major players involved in this situation now, those that say that ME is a separate disease to CFS are the World Health Organization, the CDC, people like Dr Hyde, Dr Dowsett, professor Hooper etc, and all the Medical experts who signed the ICCC

Those that are still proposing that ME and CFS are the same thing weather their calling it CFS/ME or ME/CFS are Professor Simon Wessely and his Cronies and the US patient groups and the people who support their views, hopefully the US groups will rapidly change their opinions.

News editors are dying for news, not bleeding heart stories, they need facts, so tell them about the CDC acknowledging ME and doing nothing about it, tell them about the ICC, tell them about Dr Hydes work, tell them about all the previous research being done on mixed patient groups so it had no chance of success as the patients had different diseases, tell them about the enormous amount of research that was done on ME before CFS was invented send them the information give them this link http://forums.phoenixrising.me/show...+ME+Research+Literature+and+other+information

Send them things like this by Hillary Johnston http://www.oslersweb.com/the_why___a_speech_in_london_86981.htm

The way the media works these days is if one major media outlet runs a story on ME then all the others will follow, The media outlets are interested in ME and CFS look what happened with XMRV hundreds of articles where published about it by the major news outlets all around the world, but the media has to have provable facts on which to base the stories on!!

I also think the time has come for the Phoenix Raising site changes its name from ME/CFS (Chronic Fatigue Syndrome) to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

Going off at a slight tangent, the ICC states that

Individuals meeting the International Consensus Criteria have myalgic
encephalomyelitis and should be removed from the Reeves empirical criteria and the
National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

Which means that only those that fit the ICC should be removed, which is still going to leave a large amount of people in the US stuck with being diagnosed with CFS using the Reeves criteria which Im sure most people would agree is more than diabolical and because of this large amounts of people are being misdiagnosed with CFS when they actually have other known diseases which are not being tested for because the CDC guidelines on what to test for are Rubbish!!!!!

The tests that the CDC recommends that everyone has before being given a diagnosis of CFS can be found here http://www.cdc.gov/cfs/education/wb1032/chapter2-5.html

In the article by Dr Shirwan A Mirza called the myth of chronic fatigue syndrome found by scrolling down this page
http://www.bmj.com/content/334/7605/1221.extract/reply

He explains just how bad the testing for CFS is and how to correctly diagnose a large number of common illnesses that are being missed and misdiagnosed as CFS because of following the CDC guide lines.

He explains that the common diseases that are missed by following the CDC guide lines are
Adrenal insufficiency (due to not testing for it)
Hypothyroidism (due to using the wrong reference ranges)
Pre diabetes and diabetes (due to using the wrong reference ranges and not doing the Postprandial plasma glucose test
B12 deficiency (due to using the wrong reference ranges)
Vitamin D deficiency (due to not testing for it)
Sleep apnoea (due to not testing for it)
Celiacs disease (due to not testing for it)
Hemochromatosis (due to not testing iron saturation and instead relying on Ferritin which is inaccurate)

As not doing these tests is leading to large amounts of people being misdiagnosed and suffering needlessly, I think it could prove useful if people in the US were to send this article to media outlets and create some pressure to get it compulsory for people to have a lot more testing before they can be diagnosed with CFS, Dr Mirza is a highly qualified endocrinologists and Clinical assistant professor at Auburn Memorial Hospital New York, what he is saying are medical facts and the news media will be interested in writing stories about it that may force the CDC to change its testing for CFS.

Dr Mirza can be contacted here 315-253-2669
399 Grant Avenue Road Auburn, NY 13021
If you send this as well then theres a chance that the media may contact and interview him!

It would also help to send the media these articles by Doctor Hyde as they explain that a large number of people are misdiagnose with CFS when they really have other known diseases and how to test for them and that ME and CFS are different diseases and the history behind them.
http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf

http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf

Dr Hyde contact details are here http://www.nightingale.ca/index.php?target=contact

If some good investigative journalists use this information and really start digging then theyre going to have a field day with all the other information they will find, it only took one journalist Hillary Johnston to get the CDC found guilty of misappropriating millions of CFS research money. The media will write stories on these subjects because there based on facts backed up by qualified people. The media has a lot of power to influence public opinion and government decisions and hopefully this approach could lead to some rapid change, but it has to start in the US because the rest of the Western Worlds medical systems follow what the US does!

All the best

 

Ric,

I agree 100%. But we have no credible advocacy. We have the same ME/CFS (or
fake ME groups that do the same) groups that have canonized the CCC and are
just stuck in it.

The CDC statement has been ignored and business as usual
and no inkling that they got it or cared. From what I've seen, Pandora/MCWPA
are still advertising the ME/CFS nonsense and putting out the same misinformation
that they are the same.

We can't blame Wessely, we are doing it. Yet we rant and write essays
and debate.... May make us feel good from our take on things but like they care.

With the IACFS conf, hosted by that Canadian group, and Pandora, we can imagine
what that will be about. We are on our own.

As Ric said, keep sending them info. These groups do NOT represent us.
We need to keep making corrections and counter the misinformation.
Lenny was way off in his advocacy article. We've spent far too much in countering
our so called advocacy groups that have been working against us.

Jill

.....

Hi Cort and everyone, regarding this statement

1. The key task for the co-authors of the ICC is to convince the research community and funders that their definition is worth testing." I wonder about our role here and the role of our advocacy organizations.

As far as the role of advocacy organisations in the US goes, to make a major change and get ME properly investigated. There is a massive opportunity that has been over looked for some time, and that is that the CDC has for sometime acknowledged that ME is a different disease to CFS!!!!! On its own web site the CDC quite clearly states this

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

Link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

Because the US advocacy groups have for so long been focused on the now obsolete CCC and ME/CFS and have not been willing to accept that ME is a different disease to CFS, there has been no significant attempt to get the CDC to do anything about researching ME.

Because the CDC has finally publically admitted that ME is not CFS, they legally cannot back out of this now! If the US patients and organisations can get their heads around the fact that ME is not CFS and campaign hard for the CDC to do something about it then there is a real chance that changes can be made!!!

The CDC is not doing what it promotes itself as and is trusted to do by the US government. Centre for disease control and prevention, saving lives, protecting people, saving money through prevention.

To the best of my knowledge putting this brief paragraph on their web site is the only positive thing that the CDC has done about ME since 1988 and I doubt they have any records of whos even got it in the US and have done no research on it that their admitting to.

Their statement about ME that it is associated with well documented outbreaks of disease implies very strongly that it is infectious, which means the cause needs to be found!

They also say that ME has a case definition distinct from CFS, well I think its about time the CDC let everyone know what the ME case definition is.

If the US patient organisations and patients can quickly come to grips with the fact that ME is a different disease to CFS and that ME/CFS no longer exists! And starts campaigning for the CDC and other government agencies to do something about it, and as much effort was put into this as was put into XMRV then there is good chance for success!!

I would recommend that US patients write to every possible news outlet and let them know that ME is not CFS and despite the fact that the CDC recognizes it as a separate disease they are not doing anything to help patients with it. If people Google, contact and the name of any media outlet they want to send information to you can usually find an Email address for them in under a minute.

I would recommend writing to government e.g congress men, senators.

And if the US groups could get really organized than if progress isnt made, then a legal case could be taken against the CDC, legally they are screwed if they say ME exists and dont do anything about it!!!!

The US patients are in a far better position to get a lot done about ME then the people in the UK, because in the UK ME is basically banned as a medical term with the English government using the official secrets act to suppress information on it. But in the US the government isnt suppressing information, it has taken the CDC to the federal courts for misappropriating funds allocated for CFS research and found them guilty, unfortunately it was the CAA who got Bill Reeves protection under the whistle blowers act, which then lead to people being inflicted with the Reeves definition. The US government didnt protect them by lying or using the official secrets act. The problem has always been that for whatever reasons the US groups have brought into the false ideas initially promoted by the CDC about CFS, then they embraced CFIDS and then ME/CFS, theres been virtually no acceptance that there is a separate disease called ME. So groups in the US to my knowledge have never demanded research on ME or shown any real interest in the 50 years of extensive medical research that was done on ME before 1988 I hope now that with the ICC coming out it will lead to a lot of people changing their views. If the US patients can force ME to be accepted as a disease by the main stream medical community in the US, it will then become impossible for the UK to maintain its position and the UK patients will get help as well.

Because of the major players involved in this situation now, those that say that ME is a separate disease to CFS are the World Health Organization, the CDC, people like Dr Hyde, Dr Dowsett, professor Hooper etc, and all the Medical experts who signed the ICCC

Those that are still proposing that ME and CFS are the same thing weather their calling it CFS/ME or ME/CFS are Professor Simon Wessely and his Cronies and the US patient groups and the people who support their views, hopefully the US groups will rapidly change their opinions.

News editors are dying for news, not bleeding heart stories, they need facts, so tell them about the CDC acknowledging ME and doing nothing about it, tell them about the ICC, tell them about Dr Hydes work, tell them about all the previous research being done on mixed patient groups so it had no chance of success as the patients had different diseases, tell them about the enormous amount of research that was done on ME before CFS was invented send them the information give them this link http://forums.phoenixrising.me/show...+ME+Research+Literature+and+other+information

Send them things like this by Hillary Johnston http://www.oslersweb.com/the_why___a_speech_in_london_86981.htm

The way the media works these days is if one major media outlet runs a story on ME then all the others will follow, The media outlets are interested in ME and CFS look what happened with XMRV hundreds of articles where published about it by the major news outlets all around the world, but the media has to have provable facts on which to base the stories on!!

I also think the time has come for the Phoenix Raising site changes its name from ME/CFS (Chronic Fatigue Syndrome) to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

Going off at a slight tangent, the ICC states that

Individuals meeting the International Consensus Criteria have myalgic
encephalomyelitis and should be removed from the Reeves empirical criteria and the
National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

Which means that only those that fit the ICC should be removed, which is still going to leave a large amount of people in the US stuck with being diagnosed with CFS using the Reeves criteria which Im sure most people would agree is more than diabolical and because of this large amounts of people are being misdiagnosed with CFS when they actually have other known diseases which are not being tested for because the CDC guidelines on what to test for are Rubbish!!!!!

The tests that the CDC recommends that everyone has before being given a diagnosis of CFS can be found here http://www.cdc.gov/cfs/education/wb1032/chapter2-5.html

In the article by Dr Shirwan A Mirza called the myth of chronic fatigue syndrome found by scrolling down this page
http://www.bmj.com/content/334/7605/1221.extract/reply

He explains just how bad the testing for CFS is and how to correctly diagnose a large number of common illnesses that are being missed and misdiagnosed as CFS because of following the CDC guide lines.

He explains that the common diseases that are missed by following the CDC guide lines are
Adrenal insufficiency (due to not testing for it)
Hypothyroidism (due to using the wrong reference ranges)
Pre diabetes and diabetes (due to using the wrong reference ranges and not doing the Postprandial plasma glucose test
B12 deficiency (due to using the wrong reference ranges)
Vitamin D deficiency (due to not testing for it)
Sleep apnoea (due to not testing for it)
Celiacs disease (due to not testing for it)
Hemochromatosis (due to not testing iron saturation and instead relying on Ferritin which is inaccurate)

As not doing these tests is leading to large amounts of people being misdiagnosed and suffering needlessly, I think it could prove useful if people in the US were to send this article to media outlets and create some pressure to get it compulsory for people to have a lot more testing before they can be diagnosed with CFS, Dr Mirza is a highly qualified endocrinologists and Clinical assistant professor at Auburn Memorial Hospital New York, what he is saying are medical facts and the news media will be interested in writing stories about it that may force the CDC to change its testing for CFS.

Dr Mirza can be contacted here 315-253-2669
399 Grant Avenue Road Auburn, NY 13021
If you send this as well then theres a chance that the media may contact and interview him!

It would also help to send the media these articles by Doctor Hyde as they explain that a large number of people are misdiagnose with CFS when they really have other known diseases and how to test for them and that ME and CFS are different diseases and the history behind them.
http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf

http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf

Dr Hyde contact details are here http://www.nightingale.ca/index.php?target=contact

If some good investigative journalists use this information and really start digging then theyre going to have a field day with all the other information they will find, it only took one journalist Hillary Johnston to get the CDC found guilty of misappropriating millions of CFS research money. The media will write stories on these subjects because there based on facts backed up by qualified people. The media has a lot of power to influence public opinion and government decisions and hopefully this approach could lead to some rapid change, but it has to start in the US because the rest of the Western Worlds medical systems follow what the US does!

All the best

 

Ric,

I agree 100%. But we have no credible advocacy. We have the same ME/CFS (or
fake ME groups that do the same) groups that have canonized the CCC and are
just stuck in it.

The CDC statement has been ignored and business as usual
and no inkling that they got it or cared. From what I've seen, Pandora/MCWPA
are still advertising the ME/CFS nonsense and putting out the same misinformation
that they are the same.

We can't blame Wessely, we are doing it. Yet we rant and write essays
and debate.... May make us feel good from our take on things but like they care.

With the IACFS conf, hosted by that Canadian group, and Pandora, we can imagine
what that will be about. We are on our own.

As Ric said, keep sending them info. These groups do NOT represent us.
We need to keep making corrections and counter the misinformation.
Lenny was way off in his advocacy article. We've spent far too much in countering
our so called advocacy groups that have been working against us.

Jill

.....

Jill I have to say that in my opinion continuing to run down advocacy and support groups really doesn't do much. We're a really small community; even if you or I think another group has the wrong idea - its critical that we find ways we can work together.

I'm just flabbergasted by your attacks on PANDORA - who has stated that they believe the ICC is a document of historical importance and appear to support strongly. Ditto with CAA - a conservative organization but several of their funded researchers are co-authors. I wouldn't be surprised if both organizations end up supporting the document strongly.

One of the reasons we have little credible advocacy is because we fight each other all the time. Its like Nero fiddling while Rome is burning.

Who has canonized the CCC? and why was supporting the CCC not our best option at the time? I thought the ICC was a wonderful document. Now the IACFS and 'that Canadian group' are trash apparently...

Can you provide what steps you would take to get help for this disorder?

 

Cort, It is necessary to discuss things openly. I explained why. It is not effective
to "work with" groups that are not representing our needs or positions. We have
tried discussing it and were ignored and subsequently have been banned
and censored and attacked - blogs have been written about it as it has been
so bad, and coming from forming new groups and taking over most pages.
What about their attacks and backchannel manipulation and smears of patients - that
has been the real issue.

They have been ONLY about the CCC and ME/CFS and putting out misinformation.
The CDC statement was ignored. It was not necessary to wait for this new
definition.

And no, we have little credible advocacy because of the groups themselves;
don't blame it on us. It is if anything reactive and they will respond which
ever way the political wind is blowing. But no, not worth supporting and
if anything we accomplish things in spite of them rather than because of them.
So I said it is up to us.

Jill

-----

Jill I have to say that in my opinion continuing to run down advocacy and support groups really doesn't do much. We're a really small community; even if you or I think another group has the wrong idea - its critical that we find ways we can work together.

I'm just flabbergasted by your attacks on PANDORA - who has stated that they believe the ICC is a document of historical importance and appear to support strongly. Ditto with CAA - a conservative organization but several of their funded researchers are co-authors. I wouldn't be surprised if both organizations end up supporting the document strongly.

One of the reasons we have little credible advocacy is because we fight each other all the time. Its like Nero fiddling while Rome is burning.

Who has canonized the CCC? and why was supporting the CCC not our best option at the time? I thought the ICC was a wonderful document. Now the IACFS and 'that Canadian group' are trash apparently...

Can you provide what steps you would take to get help for this disorder?

 

There comes a time to "bury the hatchet."

 

Hi Cort, I think it is really important that the ME patients criticise the US advocacy and support groups, the only way things will change is if people speak out loudly against the mistakes of the past and demand that they be corrected immediately, these groups have not helped the ME community and have continually ignored 50 years of medical research, they have ignored the work done after 1988 by the likes of Drs Hyde and Richardson, they have ignored the World Health Organisation and they have for quite some time ignored the CDC saying that ME is not CFS and the amazing opportunity that this has given for progress to be made.

I think these groups should be criticised, this information has been freely available for a long time, why is it that a bed bound ME patient in Australia can manage to read all the information and put together a web site full of correct well researched information on ME, the HFME site http://www.hfme.org/ and the CAA cant, why does it take Suzy Chapman from the UK to tell the US orgs that changes are being made to the DSM which could lead to everyone with a CFS diagnosis being relabelled as having a psychiatric disease CSSD, why are the US orgs not aware of whats happening in their own country, why is it that US patients think that ME is just the UK name for CFS? Because the US orgs are telling them this! ME was recognized in the US for years before 1988 the US does recognize the WHO, its the US orgs that have insisted on calling it CFIDS or ME/CFS, why do most of the US patients seem to be completely unaware that the most commonly used name in the US for ME before 1988 was Epidemic Neuromyasthenia a term that was also used in the UK interchangeably with ME the same as Hansens disease is the other name for leprosy. Why are US patients largely oblivious to all the epidemics of ME in their own country pre Lake Tahoe, why have there been no demands from the US orgs for the research into the likes of SPECT, PET, QEEG scans, the decades of evidence showing Enteroviruses as the most likely cause. Why have all these things happened? Because the US orgs have ignored all medical evidence that doesnt fit their personal agendas, and have done nothing to promote the evidence and demand more research.

Why is it that there have been UK groups that have from the start made contact with the likes of Ramsey and Richardson and continued to promote their work and have then embraced the work of the likes of Hyde, while in the US they had their own ME experts such as Shelokov and Henderson and nothing has been done to contact them, Dr Henderson to the best of my knowledge is still alive, instead the US groups have decided that they should ignore the medical evidence and promote their own alternative view of reality. Should they be criticised for all this? YES!!! Do we really want them to keep doing the same thing?? Surly its important that they are aware that their behaviour is not approved of and that changes have to be made!

Should the US orgs be criticised for never doing anything to help the misdiagnosed, for never organising campaigns demanding that more testing has to be mandatorily included in the CFS definitions so that so many people dont get misdiagnosed with CFS, for not getting this information to the press, why arent they screaming from the roof tops about this and doing everything they can to warn people that they need to get more testing, Dr Hyde has laid out information on how to properly test people to rule out other diseases, and its been available for years http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf

Should the CAA be criticised for getting Bill Reeves whistle blower protection, when he was about to be found guilty of leading the team at the CDC that had misappropriated millions of dollars of research money for CFS, and is the main culprit in inventing CFS and denying the existence of ME, this then lead to him keeping his job and inflicting the Reeves definition on the US public, Should the CAA be criticised for accepting millions of dollars from the CDC and using it to promote the Reeves definition, Obviously, YES!!!

Id just like to add for anyone reading that Im not in any way criticising US patients, Im criticising the organizations that have let them down terribly!!!

Although people in the US are seeing the ICC statement as if it is some amazing achievement that they are calling for ME to be separated from CFS, for the people in places like the UK and Australia who have never lost contact with all the previous medical research, the reaction is more like about time, even the CDC bet you to it.

Regarding Corts question to Jill why was supporting the CCC not our best option at the time? The reason it wasnt the best option is because ME was already a recognized disease with a vast body of medical literature behind it that showed that what the CCC was saying was incorrect! But the US orgs had chosen to ignore it. And it was a very flawed document and basically just another CFS definition, that has muddled up the CFS symptom group with the ME group and created a disease that doesnt exist and the unfortunate conscience of them including more serious symptoms in it is, that it lead people with other serious diseases to think they had ME/CFS when they dont have ME, and often had other very serious diseases and their belief they had ME/CFS stopped them pursuing the correct diagnosis. Most of Dr Hydes patients are Canadian and have been diagnosed using the CCC and he finds 75% are misdiagnosed and actually have other serious and often treatable diseases. Thankfully a lot of the writers of the ICC were writers of the CCC and they have set about correcting their mistakes, they have used the CCC as a starting point, but the new definition now contains virtually nothing of the CCC.

Its very understandable that the US patients would have thought that embracing the CCC was a good idea, but the fault lies with the US orgs because they have ignored the medical evidence on ME for so long and convinced the US patients of their own views of what it is, so they embraced the idea of including ME in the name because it makes it sound more serious then the insulting term CFS and were happy to see the more serious symptoms added, because it appeared to be more inclusive and sympathetic to peoples suffering whereas most of the other CFS definitions tend towards being very demeaning towards what the patients are suffering!

For the groups in other parts of the world who had never lost contact with what ME was, the reaction was more like thanks we already know what ME is and the CCC is not a description of ME, so were not having a bar of it.

If the US orgs had from the very beginning promoted the truth and not ignored 50 years of medical evidence and inflicted their false opinions on the US public then the CCC would not have been so eagerly embraced in the US.

Its also understandable why a lot of US patients reject all the previous ME information, they have for so long been believing the US orgs view and the information in the CCC, so when they look at the symptoms they say well thats not what I have, so it cant be right, but a lot of people dont seem to want to entertain the idea that maybe it is right and they dont have ME, theres something else seriously wrong with them. For anyone thinking along those lines I would recommend reading this http://www.hfme.org/wheretoaftermisdiagnosis.htm

This concept that everybody has to come to agreement on what the one disease everybody has and what should be done about it is never going to work and never has, for the simple reason that the people who have wrongly been grouped together under the various different names CFS, ME, CFIDS, ME/CFS dont all have the same disease!!! Theres ME and a vast number of other known diseases that are being misdiagnosed as CFS and ME, because of the ridiculous CFS definitions and the refusal on the part of governments to insist that people are intensively investigated before they get diagnosed, plus its just too damned easy for lazy doctors to stick these diagnoses on people!!! There may be some other as yet undiscovered diseases in the mix ,but nobody will ever know until everybody is tested properly.

Im not saying the different groups shouldnt support each other, Im saying they need to recognize that everybody doesnt have the same illness and help each different groups pursue correct diagnosis and treatment!! But if people keep insisting that everyone has the same disease, this will just keep spinning round in circles for the next twenty years, just as it has in the last twenty years!!!!!!

My answer to Corts question to Jill Can you provide what steps you would take to get help for this disorder? Is to follow the advice in my previous post and for people to contact the press and government representatives with information along the lines that I have outlined in that post, Put pressure on the CDC to act on their statement that ME is a different disease to CFS by setting the press and government on them, and let the whole world know about the appalling small amount of testing that has to be done before someone is given a CFS diagnosis and that doctors who tests more frequently find the real causes and can treat the patients and demand that more testing has to be done.

The power in this world lies with the media and the politicians no matter how great the US orgs think they are they have consistently proved that they have no power!!!! And are not interested in even doing the research to get the facts right, waiting for them to get their act together is pointless, it may be years before they do!!!! People shouldnt accept them as leaders!!! just send information to the press and government and try and get the ball rolling NOW!!!!!

If anyone is wondering why Im not doing this myself, one Im in New Zealand and Two the Email is broken on my computer and my medical bills are so large I wont be able to afford to get it fixed for some time, But because I understand how hard it is for people to find the energy to do things when their sick in the interest of helping people make a change, here is a large number of contact details for US media outlets

All the best

US TV networks
CNN US
http://edition.cnn.com/feedback/dotcom/
ABC US
http://abcnews.go.com/Site/page?id=3068843
CBS US
http://www.cbsnews.com/stories/1998/08/01/eveningnews/main15218.shtml
FOX US
http://www.foxnews.com/story/0,2933,77538,00.html
NBC US
http://www.msnbc.msn.com/id/3303518/
US Newspapers
Washington Post US
http://projects.washingtonpost.com/staff/email/
Washington Times Us
http://www.washingtontimes.com/contact-us/
Chicago Sun-Times Us
http://www.suntimes.com/aboutus/contactus/
Chicago Tribune US
http://www.chicagotribune.com/about/chi-newspaperemail,0,3525235.htmlstory
Boston Globe
http://bostonglobe.com/aboutus/contact_us/default.aspx
Detroit News
http://detnews.com/article/99999999/INFO/71011001/Contact-The-Detroit-News
New York Post
http://www.nypost.com/contact/contactus.htm
New York Times
http://www.nytimes.com/ref/membercenter/help/infoservdirectory.html
Wall Street Journal
http://online.wsj.com/public/page/contact_us.html
http://help.wsj.com/contact-us/
Los Angeles Times US
http://www.latimes.com/about/mediagroup/la-mediacenter-editorial_staff,0,3058915.htmlstory
San Francisco chronicle US
http://www.sfgate.com/chronicle/info/e-mail/
San Francisco examiner US
http://www.sfexaminer.com/info/contact
The Denver Post Us
http://www.denverpost.com/contactus
The Dallas morning news
http://www.dallasnews.com/news-tips/