It's actually good to discover we all have different conditions, because it will then prove that the previous figures of treatments worked far better than originally thought, as potentially the drugs that failed, were being used in the wrong subgroup. Treat the right subgroup, and suddenly you discover the infections and autoimmunity keeping patients sick, and can then use targeted therapy to get patients significantly better, not cured, but better function.
CFS1 -Chronic Viral
CFS2- Chronic Bacterial (Lyme)
CFS3 -Chronic Retroviral HERV
CFS4- Autoimmune non HERV
CFS5- Fatigue orientated CDC
CFS6- Post infectious behavioural disorder (F48.0).
ME and Chronic Lyme is one of the above subsets or a mixture of multiple subsets, but we need the right subset to know in the future that ARV's will work for this subset. And for that, we need more biomedical research for ALL subsets.
By shedding malignant BPS psychiatry, this is all possible, but governments love psychiatry as the public diagnosed with CFS are then always guilty until proven innocent. Who would benefit from that? Many companies and health agencies involved in causing these diseases to spread out of control.
Taking that on board, this is in conclusion why some are so terrified of the 'idea' that it's even possible that anyone with a diagnosis of CFS, could ever respond legitimately to ARV's (dumb I know).
I feel there is a fear among some with vested interest, than CFS could ever be biological based at all! We must overcome these people controlling us, by educating ourselves by finding evidence of inflammation and rejecting powerful government lobbyists who continually try to 'prove' to us, we have have no chronic inflammation.
And to do this, you need multiple Cytokine and Chemokine tests, and to test not just once, but 3, 4, 5 times to show consistent inflammatory response (also order an FBC/WBC to 'prove', ideally you didn't have a raging infection on the day of the test). In other words, a normal or high normal white blood cell count, with a very high Cytokine response, cannot be palmed off as
''ohh you must have had a cold on the day of the Cytokine test''.
Make sure you plan all this in advance, think ahead when ordering blood tests and order additional tests in which you predict skeptics would use against you, to de-validate your abnormal core tests. (FBC/WBC is one), as is ESR/CRP.
In ME, generally, you're looking for multiple high cytokines and chemokines (associated to glial cell activation) - worsened by exercise and activity, lack of sleep- that all stress the body...but... with a normal ESR/CRP, normal FBC/WBC. This way you demonstrate innate immune system activation (classic ME CFS) without acute phase reactants that would be 'up' with an infection that we all get from time to time when healthy.
If you're well enough, video record your adventure. Do a blood draw on an average day, and then follow a CBT/GET get program if you can, until you feel so awful you can't stand up. Then get a blood draw during a bad PEM/PER event. I've done this, and of course, the inflammation is higher, because the body is wrecked from mitochondrial burn out, more innate immune activation, stress from so much pain/lack of sleep. BUT, the government says this is in your mind and you don't need to stop, continue with your GET. (Fraud of course). Prove it with these tests if you can on a 'bad day', psychs say a bad day is the behavioral fear making you feel 'ill' that you fear exercise made you worse. The truth is, it's cytokine expression. I proved this by gently riding an exercise bike (this was years ago) and adhering to CBT/GET programme.
That's all saved, documented, and in time I will sue the hospital who told me, to continue and not listen to my body.
(They are so dumb they don't consider if they're wrong, and just like down the phone at you, so record their phone conversation (as they claiming GET is harmless) and just tell them (legitimately) you have terrible short term memory and do you mind if I record this, or just write some notes when in the doctors office, what they claim. Again, they are so dumb, they will hand you an A4 sheet of 'exercises for CFS'. Photocopy this and store it for when you sue them, as the'exercise for CFS' never was validated as safe, it was invented by psychiatrists who say ME is a myth. (Very dangerous in medical circles to do this and distribute this information to patients with no evidence base!).
Also remember autoimmune diseases can can cause things to go haywire, so with Lupus when ESR is up, CRP is down, or you may miss this and need to retest, because you thought you had Lupus or other autoimmunity and didn't. (always retest around 6-8 weeks after an abnormal inflammatory result involving ESR/CRP, to rule out an infection which should clear within 5-7 days). In ME, often the ESR is low or zero. As ESR is associated to inflammation, few doctors would believe you if you had zero ESR that you had terrible pain, but doctors don't test cytokines, because this is still 'new' to mainstream medicine and testing cytokines is not only expensive and difficult (can need freezing).
Something in ME causes this chronic cytokine expression (Oddly, Dr Lipkin's research saying inflammation is absent after 3 years) but this research is clearly not on ME patients but people who meet fatigue criteria). Conversely, Dr Montoya's patents were 85% infected with retrovirus and DO have high levels of Cytokine inflammation). Did we ever see Dr Montoya's cytokine test that was said to show severe vs mild CFS - also shown by Australian researchers? No, it was superceeded by Dr Lipkins absence of Cytokine response! after 3 years, nothing there, hmmm! What a strange turn of events. May 2014 Dr Montoya's Cytokine paper was due for release. Where is it?
Like other kids with ME (now rather older) I discovered that my whole family tested positive for Lyme and Chlamydia Pneumoniae, but that's just the start of it. No HERV tests are available yet, only on a research basis. Also to test for pathogens it's stupidly expensive, we need the 'lab on a chip' test to come out and test for 100 viruses at once, for $250 a go. That would sell...
Proving a retrovirus to warrant ARV use is obviously the holy grail, but realistically, we have to wait to see the research published first, and then wait for labs to see these pathogens are detectable and profitable. Sadly in medicine everything is about profit.
It's much more profitable not to cure cancer, and ironically, you can spread cancer by giving everyone low level chronic inflammation from HERV's via other pathogens activating HERV's and then tell them they're somatizers, depressed, or 'weird'.. That happened too.
None of these conditions below have a
diagnostic test, but may all share common pathogens if on closer inspection we drop the 'behavioral' idea and focus on how brain inflammation alters behavior and sensory input, then factor in gene expression and environmental factors:
Alzheimer's
CFS
ME
Autism
ADHD
ADD
ODD
Depression
Fibromyalgia
Schizophrenia
And many more....many at increasing rates over the last 40+ years.
If there were marketable Retrovirus tests, all of these conditions could be tested, plus all people with existing neurological and immunological and neurological diseases.
The false story of XMRV, lit a burning wick to make patients think outside the box and not accept living like mushrooms (being kept in the dark and fed on BS). Always explore every logical avenue if you can, and research yourself ideas you have and see if they're at all plausible.
There are endless research papers here to search:
http://www.ncbi.nlm.nih.gov/pubmed
Try and chose other conditions, other than CFS, that involve similar findings, and often there are your answers to link to your own condition, experimentally, and then if you find a link, research it further to see where it goes. Ignore fatigue, and focus on infection, inflammation, prions, neurology, autoimmunity, POTS, vascular, cardiovascular, respiratory, allergy etc and see the links.
It all ties in with the human body under siege from inflammation, and consequent organ dysfunction. The brain doesn't work in CFS. Try and find for yourself what's going wrong in your own body, by looking for brain inflammation markers (glial cell markers), if you have organic ME CFS, it'll come back positive and then you know you may have organic ME CFS. Do that with 20 different tests, and you know you
likely have ME CFS, whatever that is.
Then get smart and remember the links you made with other conditions, and notice the alleged controversial CFS findings (that are rejected by the state) well they actually correlate biomarkers for HIV/AIDS, Lyme, and even signs of dementia (chronic low blood flow to the brain), autoimmunity, pituitary gland inflammation, or GH deficiency signs (brain injury).
Everything that is denied in CFS biomedical research, I tend to test positive for. Think what that means, there
is an known biological disorder that causes ME. ME is real and will be proven within a few years to be why people with 'CFS', are so terribly ill and we have all been lied to, irrespective what subset you are.
The current CBT/GET idea is fraudulent, criminal and the people who push it will eventually be jailed for the biggest ever medical conspiracy to grace this planet. (Infecting tens of millions of people then blaming them, even if you kill 1% of ME CFS sufferers, means you kill at least a million people over decades). That's genocidal behavior.
If you get future treatment, you get well, if you get well, you can cope with stress, if you can cope with stress, you can sue them for preventing biomedical research on the basis of xenophobic, sexist, discrimination. CFS being claimed as a Women's disease (they know damn well autoimmune diseases affect many more women than men).
By calling CFS a Women's disease, they invalidate men. Tonnes of men have CFS, maybe 5 million globally. They also then allow men, to believe Women with CFS must be hysterical and neurotic (also sexist) and thus haul in the somatization experts. This is entirely planned. ME CFS patients have no previous mental history prior to disease onset, and don't even suffer from depression at higher rates than MS, despite the appalling treatment they get. The biomedical defects in ME are also not reproducible by deconditioning (see VO2 max 2-day results the CDC won't allow to be part of a CFS screening tool), they want' 1-day VO2 max, that then allows for deconditioned fatigued people to claim your legitimacy, illegitimately. They know this.
If you sue CDC/NIH/HSS/NHS who run health policy you will get financial compensation for them ruining you life and you will validate your real struggle as something imposed on you against your will (being trapped inside your home with no treatment due to no treatment, no treatment based on assumption your symptoms are maintained by a mind-body ''circle'' (CDC Dr Unger's owns words regarding CFS), then you have been falsely imprisoned and need to be reimbursed financially, as stolen time cannot be replaced, tragically.
Now is not the time to give up, absolutely positively do not give up now. XMRV would never work out even if it was real, they will never, ever, allow global vaccine contamination to be validated. What they will allow is to say you have HERV's we don't know what causes this (Xenotropic retroviruses genes could do) and yea, well I guess you can have the drugs if you pay for it (what has just happened in MS in the UK after a successful ARV trial in MS, no one with MS in UK will get ARV's free from the state because of the cost and the possible cause). Same will happen with ME CFS, another neuroimmune disease, one of many that barely exist in 1950, and is now everywhere.
What happened in the 1950's? First global introduction of vaccines into Western developed civilization, vaccines made from mouse brains and other animal tissue. Animals believed then, impossible to transfer infections into humans using their cells in humans. Now we know cell lines CAN be contaminated, then the story has changed. Too late for the people injected, often who are us, or are our parents, or are the person who gave us blood donation (e.g. if we're pregnant women who bleed) who then have babies with Autism/CFS post blood transfusion with no Autism in the family. Lyme patients can donate blood by the way. Insane, but true.
It won't come out in the wash, but HERV autoimmunity in CFS will be proven by how patients respond to ARV's and others respond to more radical therapies (Chemotherapy drugs), that can't be taken long term and won't work in severely affected anyway if the bone marrow is infected and expression proteins that travel to the brain, inducing deranged prion proteins via the spleen/via bacterial translocation into the brain via the stomach.
Social media has been the undoing of psychiatry, patients network together and by talking openly about so many disabilities they have, they realise they aren't unique after all (often told this by doctors) but share identical or similar symptoms, who then share the same pathogens, or autoimmune diseases and that they never knew this, before talking to others online.
This is why psychiatry is terrified of educated intelligent CFS ME patients. Educated CFS ME patients, collectively expose scientific fraud and never stop until they find the answers
why they are chronically ill, precisely what psychiatry cannot do, and never intends to do because their treatment is to blame your mind for keeping you sick (CBT/GET for ''fear of exercise''). That is of course nonsense, and a thing of parody.
in 2017 power will be initiated, gradually, to the side of normality. Power wrestled from a vice like grip, into more equal territory, slowly, but it is happening behind the scenes. All psychiatry can do is spread hatred in the media about non existing dangerous patients (akin to what dictators do to any opposing political force) and make the public view ME CFS patients as inferior mentally ill patients, unbalanced people who ''believe in a virus'' and irrationally reject empathic psychiatry. Consequently by state approved hatred (no one was ever reprimanded by their medical governing bodies), ME CFS patients are then seen as people not to be believed or have empathy shown towards because they are allegedly mentally twisted. This plot failed, and it failed because a ruse can never last for ever and through technology, Science advances, and sensible people listen to the patients, follow biomedical research and make advances in Science on behalf of it, and their patients.
Many ME CFS sufferers are ironically educated better than general medics, as general medicine has no biomedical training for doctors towards ME CFS pathology in medical school, not one course! This will change rapidly, it will become shameful for doctors to shrug and turn the other cheek, because they won't be allowed to ignore people with a disease that is life long, and not caused by the mind, but by infection and autoimmunity. Ignoring ME CFS will become as crazy as ignoring Parkinson's disease, which will likely share some mitochondrial pathology with ME CFS as if you look at mitochondria and Parkinson's brain pathology there are some interesting overlaps with ME CFS, e.g. both being a catastrophic lack of ATP (energy) in brain regions, differing of course.
So things are looking up, if taken on the huge sliding scale of decades. It'll still take years, but years is better than never.
Private researchers will change the face of ME CFS, positively, forever. The government agencies are still not researching and focusing on ME, but pointless ego boosting exercise in analyzing generic fatigue patients, who never need to display the signs of cardinal ME, who will never show a consistent gross finding, due to heterogeneity. So in there you won't find huge rates of retroviruses, Lyme or Autoimmunity - accidentally on purpose, otherwise they'd do the opposite.
As long as people donate to the OMF and other biomedical ME charities who funded cutting edge neuroimmunology and autoimmunity studies, we'll get there soon, and now I'm flying around the room with vertigo and don't really know where I am from using my brain so much, I will bid you all adieu.
http://www.openmedicinefoundation.org/