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.
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
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
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