Here are some extracts from a personal statement I've forwarded to some friends in the UK, encouraging them to tune into the podcast...
Now is a time of great hope, and also of great fear...
I am writing to recommend you - in your own interest - to take as many minutes of your time as you can to read the important information below, if possible to watch some of the video footage, and to recommend your friends and family to do the same.
It's unfolding live right now! Day 2 starts today Fri Oct 30 at 1:15PM UK Time and continues until about 9:30PM UK Time, via RealPlayer, details here, don't miss it: the podcast won't be available in the archive for some time after today:
http://forums.aboutmecfs.org/showthread.php?t=761
Highlights from Day 1:
Search Google Videos for "CFSAC Meeting youtube":
http://tinyurl.com/yzdt7dj
The presentations are compelling, frightening, exciting all at the same time. We may instinctively wish to turn away from them and await further confirmation. But we cannot afford to act slowly in response to this news - the implications are too serious to ignore.
XMRV is a gammaretrovirus which infects the immune system, and the indications are that it has been spreading rapidly as an infectious disease for at least 20 years and now infects 3-4% of the US population. It is strongly believed to play a key role in a significant proportion of cases of a wide range of serious medical conditions, including neurological conditions and ideopathic diseases of the immune system.
There is now very little room left for doubt: these latest findings regarding XMRV imply a major health epidemic on the scale of AIDS or worse (far more people are affected). This new retrovirus has also been found in the same levels in the international samples, so it is...
!!! HIGHLY LIKELY that up to 1 IN 25 UK CITIZENS ARE NOW INFECTED WITH THE XMRV RETROVIRUS !!!
!!! THREE LABS HAVE NOW CONFIRMED THE US TEST RESULTS !!!
!!! THE RESEARCHERS HAVE URGED PATIENTS WITH IDEOPATHIC (UNKNOWN) CHRONIC ILLNESSES FEATURING PERSISTENT FATIGUE NOT TO GIVE BLOOD !!!
!!! As well as a 98% link with cases of both CHRONIC FATIGUE SYNDROME (CFS), M.E. and FIBROMYALGIA (FM), many other conditions are believed to be associated with XMRV INFECTION. Early studies have found elevated levels of XMRV in cases of PROSTATE CANCER and other CANCERS, LEUKAEMIAS AND LYMPHOMAS, as well as 40% of people with AUTISM in one small study, and there is evidence of connection with IMMUNE DYSFUNCTIONS, atypical MULTIPLE SCLEROSES, CHILDHOOD ALZHEIMER'S, IRRITABLE BOWEL SYNDROME (IBS), POST-TRAUMATIC STRESS DISORDER, some misdiagnoses of RHEUMATIC CONDITIONS and even some US cases diagnosed as MUNCHAUSEN'S BY PROXY !!!
!!! MAJOR LAWSUITS ARE ALREADY UNDER WAY REGARDING CASES WHERE TRANSMISSION VIA BLOOD TRANSFUSION HAS BEEN DEMONSTRATED !!!
"All of you with CFS have the attention of the world today.....XMRV is the piece of the puzzle that can't be ignored. Today ends the debate....CFS IS NOT and NEVER WAS a psychiatric illness."
(Annette Whittemore (funder and founder of the Whittemore-Peterson Institute (W-P I))
3 different laboratories have confirmed the results, including the US National Cancer Institute. The retrovirus was found, in multiple sub-test expressions, in 2/3 of the test cohort of (US and international) patients with CFS and ME, and in further results 99 out of 101 of the test cohort test positive on at least one of the sub-tests. These detailed results were confirmed by the other 2 research centres. By comparison, just 3-4% of the control population tested positive.
Please watch as much as you can - and encourage friends and family to watch as much as they can of the testimonies, and the scientific presentations, and all the other youtube highlights from the first day of the CFSAC meeting (CFSAC is the US government advisory group dealing with CFS and thus, now, with the discovery of the XMRV virus). The meeting couldn't be easier to view: try the following google/youtube searches for "CFSAC" - Dr Petersen's presentation begins in the clip "Part 1" after just over 1 minute of preamble from the committee chair. The scientific presentation is less than half an hour, and takes a few minutes to get going, but it does reveal the state of the art scientific information on XMRV and I'd encourage you to stick with it and absorb as much as you can, it's really important.
Search Google Videos for "CFSAC Meeting youtube":
http://tinyurl.com/yzdt7dj
For human statements, many of them heartfelt and emotional from those who have suffered alone for 2 decades or longer, I commend the 5-minute testimonies. Ms Whittemore's presentation is also very important.
If you're in the UK, please fax your mp (use
www.writetothem.com) about XMRV and CFS and ASK WHAT THE UK IS DOING ABOUT IT - if you like, give him a piece of your mind while you're at it...some suggestions follow further down the page.
Key Quotes from the historic CFSAC Advisory committe, Day 1:
"All of you with CFS have the attention of the world today.....XMRV is the piece of the puzzle that can't be ignored. Today ends the debate....CFS IS NOT and NEVER WAS a psychiatric illness."
(Annette Whittemore (funder and founder of the Whittemore-Peterson Institute (W-P I))
The US Centre for Disease Control (CDC) was accused of crimes against humanity in the culmination of one presentation from a member of the public, resulting in a wide round of applause.
The prevailing feeling from the government health agency representatives was perhaps best summed up by this quote from the CDC Rep:
"Responding to his response, I can't respond"
Government bodies including CDC, NIH and others gave brief presentations indicating that they would not be able to make any real comment on anything today and, overall, had nothing much to say about it. Some of them had to be off sharpish to go screen some blood. The highly controversial Dr Reeves, who had been due to give a key presentation on the finalised CDC 5-year plan for CFS, was unable to be present. He is believed to be on the way out, and may indeed have already left the building.
Continuation of the long controversy over Reeves' chosen selection criteria (the CDC, to widepsread comndemnation, have twice changed and extended the definition of CFS in a highly misleading way that tends to include various depressive illnesses and exclude many of the wide range of CFS/XAND sufferers) led to some savage attacks on Dr Reeves, the man responsible at the CDC for defining these tests, culminating in the best joke of the day when one public presentation suggested naming the condition suffered by the 'rump' of people who test XAND negative but fall into Dr Reeves' definition of CFS: "Reeves Disease".
By common consent, thus is it now defined.
[ED'S NOTE:
In the UK, we may perhaps come to define an equivalent: "Wessley's Disease". We might define "Wessley's Disease by Proxy" as a psychological disorder prevalent in the UK amongst psychotherapeutic research scientists, practitioners, and others, in which fear of physical disease and of the unknown prompts them to compulsively present fictitious psychiatric illnesses as purported explanations of the medical symptoms of their patients. XAND patients treated by physicians suffering from "Wessley's By Proxy" may come to be studied as a separate and acute form of XAND, one in which the patient's symptoms have been worsened and prolonged by the enthusiastic propagation of ignorant and damaging societal myths and therapeutic recommendations. Affected practitioners may need to be referred for psychiatric and other corrective therapies.]
If you're in the UK, please fax your mp about XMRV and ASK WHAT THE UK IS DOING ABOUT IT - if you like, give him a piece of your mind while you're at it...some suggestions follow below:
http://www.writetothem.com/
Personally, I think it might be a good idea to suggest we start preliminary testing of the blood supply right away using the preliminary tests of the W-PI Istitute, so you could mention that. You could also call for a criminal investigation and parliamentary inquiry into the long-standing allegations of a cover-up by certain key influential individuals who have consistently and strongly denied the existence of any physical illness, and ask what is being done right now to help, support, and advise existing diagnosed and undiagnosed CFS-spectrum sufferers.
Here's a good one: You could ask for figures of how many of us there are in the UK, which would highlight the fact that they don't collect proper statistics because none of us are registered because they do not accept that the condition exists.
We now know that we have a retroviral illness, yet we can still only obtain a psychiatric diagnosis in the UK. Even in the US this is now considered to be a backward practice, and most states recognise CFS to be a physical illness with physical diagnostic tests (tests which are still unavailable in the UK). We need to establish a new NATIONAL MEDICAL CENTRE to both study and treat XAND-related conditions and similar syndromatic conditions. We need recognition for sufferers , access to already-well-established tests and treatments, better training of GPs, and ultimately, apologies and reconciliation from a society that many, many of us feel has let us down.
We need to ACT NOW BEFORE MORE LIVES ARE NEEDLESSLY RUINED by this epidemic. We need to question our governments and our health authorities and demand that they now act fast to make up for the failings of the past 20 years.
The time for caution is over. You can't ignore us any longer. Now is a time for great fear, and also for great hope.
Thanks so much for reading,
Mr X
On a lighter note, you would have to be extremely naive and trusting to automatically believe everything you hear or see in the following presentations. It is far more likely that the official line is true and correct: It was mice. Probably...
http://www.youtube.com/watch?v=lU12h6lWi9I&feature=related
http://www.youtube.com/watch?v=CDxZ7PX8YGI&NR=1
http://www.youtube.com/watch?v=w8FX-B9vcgg&NR=1
xxx Mr X
