I would like to know why I was in an HIV/AIDS ward for 7 weeks, neglected and refused anything but CBT/Physio, told it was all in my head - yet also told (just once) that Cytokines in ME/CFS makes patients feel awful and it's not in my mind. I have never forgotten that comment.
How did they know this 13 yrs ago (Inflammatory Cytokines), yet still simutaneously run a state program of disinformation that ME/CFS is a mental illness and continue to do so to this very day - by Professor Peter White (Psychiatrist) and other pals?
The person who told me this is a professor who specialises in HIV/AIDS treatment. I am probably the only ME/CFS patient in the world to be in an AIDS ward, and get (effectively) locked down and ignored on purpose by all medical staff. This order to neglect me is in writing, I have a copy.
I say this, because they must have known the link between a retrovirus in ME/CFS and HIV 20 years ago. Both diseases exploded in the 1980's, with ME/CFS being blamed on rich, white upper class neurotic women, 'Yuppie Flu' and HIV being blamed on Gays. 'Gay Flu'.
It wouldn't surprise me at all if ME/CFS is a fatiguing bio-weapon caused by a virus like XMRV. Why? Soldiers are much more costly off the battlefield if they are to be cared for in military hospitals, than if they are dead and gone. Why is ME covered under the official secrets act in the UK (By the Medical Research Council) until 2073. Why is ME a 'National Secret'?
XMRV appears to tell us why.
All of us with ME/CFS are only alive because our families/partners sacrifice their own lives to care for us. ME/CFS is immensely costly to 'deal' with, and thus is best dealt with a cheap programme of Psychiatric 'theory' and false claims of 85% recovery from a mental aberration in 3 days - aka 'The Lightning Process'.
The reality, is ofcourse, this.
I would love to know the link between HIV/AIDS and ME/CFS.
In relation to ME/CFS and the serious implications of the dysfunction of immune cells that indisputably occurs in the disorder, one cannot help but call to mind the letter dated 16th June 2000 from Mrs Helen Wiggins at the Department of Health NHS Executive Headquarters in Leeds sent to members of the Chief Medical Officers Working Group on CFS/ME; this letter stressed that it had become increasingly important that any documents or information, in whole or in part, that might contribute to the CMOs report must be kept confidential and to this end, members of the Working Group might be compelled to sign the Official Secrets Act. This was followed up by letter dated 23rd October from Lord Hunt, then Parliamentary Under Secretary of State at the Department of Health, (ref: POH (6) 5380/83), confirming that the information held by the Working Group might in certain circumstances indeed be covered by the Official Secrets Act.
One wonders how the consideration of ME/CFS could rank as a state secret and of what, precisely, is the Department of Health so afraid that it even considered the use of such draconian powers?
''Medical Research Council: Registered Files, Scientific Matters (S Series) F...''
Please see screen grabs showing the result attached. It should be noted
someone did get to apply to see the file, but they were told it's a censored version. (Unsurprisingly). The word used was ''Redacted''. What use is a censored version?
If you click on FULL DETAILS, once you find the file it says it's blocked for 73 years and this starts in 1989. In 1990/1 De Frietas found XMRV and the CDC
said they couldn't afford the plane ticket to come verify her findings.
The word ME was denied, and CFS was created in the USA in it's place and sold to the UK and then the world as a 'life-style choice'.
Check this little beauty:
'''During the life (1998-2002) of the Chief Medical Officers Working Group on ME/CFS, members were ordered not to discuss the deliberations and were even threatened with the Official Secrets Act. If the psychiatric lobby which dominated that Working Group was so confident that they were right, why the need to force the suppression of opposing views by resorting to threats of prosecution under the Official Secrets Act in a Working Group that had nothing to do with State security but was supposed to be acting simply in the best interests of sick people?'
Sticking with the MRC (Medical Research Council) who hold the secret file on ME, I have a PDF somewhere of a court case in the UK that tried to find out why all funding only ever goes to psychiatry, but is always turned down.
The MRC (Medical Research Council) won the case with the judge saying the anonymity of the MRC members, was overiding that of the public to know what the research applications where, that were turned down. (It's a well known fact that the MRC block bio-medical funding into research applications in ME CFS - yet they cannot explain why). Psychiatry gets funded for 'Nurse lead therapy' over a telephone, but not research into muscle fatigue and lactic acid in MR scanners. Interesting....
I want to keep on track here about HIV and XMRV. I am just sure XMRV must be the cause of post infective/viral ME. Why did the British get a military Psychiatrist (Simon Wessely), and place him, in charge of a disease he says doesn't not exist? Here's a good quote from Wessely:
''I will argue that ME is simply a belief, the belief that one has an illness called ME.'' (ME is of course a neurological disease classified by the World Health Organisation, since 1969. ICD-10 G93.3
Are people in denial of Autism, put in charge of health programmes who deny Autism exists? I think not. Why did the Department of Health get an HIV/AIDS specialist on a panel of 'experts' who obsesses over CBT/GE/Pacing and 'Life style management'? It just doesn't add up. He should be talking about immunology, yet not one word.
Again an incredible turn of events when ME CFS is labelled officially as, and I quote: 'Chronic Long Term Tiredness.' The Department of Health says 'Evidence Based Medicine' only exists for CBT/GE/. So why can we not donate blood?
HIV patients get 'Crimson Crescents' in their throat, I believe due to HHV-6? infection that leads on to cancer (Kaposi's Sarcoma).
ME patients also get 'Crimson Crescents' . I was diagnosed with this myself, or should I say - observed as to having this.
1. People with HIV who feel tired or have other symptoms might not get diagnosed with CFS because those symptoms are attributed to HIV or the meds they are taking.
There is probably a population though whose HIV viral load is low-nonexistent, good CD4 counts who still feel unwell but this might not be attributed to CFS.
2. There are HIV patients who are "treatment-resistant" - not doing well despite different regimens of HIV meds. Could they also have XMRV and HIV both?
I think that initially they thought XMRV infection correlated with the RNASEL gene abnormality, but when they tested more people this didn't end up being the case. I can't remember if I read that in the actual science paper, or if it was reported in the media afterword.
Its also not clear to me if the presence of LMW RnaseL enzyme fragments is an indication of an underlying genetic problem, or just a phenomenon observed in people with certain types of infections, exposures, etc...