I fear your hopes will be dashed but would love to be proven wrong:
Here is why I believe anything with the MRC's association will fail, even well meaning people with an open mind:
Monsieur Davy Smith will find nothing related to Ramsay ME in a heterogenous cohort of CFS patients in the same way you would never find HIV in a cohort of CFS to prove that HIV causes AIDS (formally known as CFS - if that was the hypothesis).
Ramsay ME is rarely researched, unless Pro-ME physicians hand pick patients they think probably have ME. Statistically in CFS (CFS must remain as unexplained fatigue syndrome), this leads to disease bias, and thus 12% of CFS patients with neuroinflammation aren't representative of the other 88% - so we never research ME.
So well meaning people in the MRC, will be stymied by this diagnostic criteria disability. (Fukuda, Oxford or otherwise).
Here's why:
Problem 1:
Master virus hunter Ian Lipkin who outside of CFS is in no doubt established finds NOTHING in his previous work in American CFS cohorts, he is a de-discoverer after all, governments love him. In contrast, for decades
other American CFS researchers
have found multiple Viruses and Bacteria in countless CFS studies over decades. Again I repeat, Ian Lipkin found nothing of note, a few HHV-6 I believe. Naturally, then, existing infection can be dismissed as relevent for political reasons, as after all, Dr Lipkin's (essentially) negative paper was only one study, not 125 studies.
Now, compare his findings of de associating chronic infection with CFS, with the work of Kenny De Meirleir or Dan Peterson - who both find
chronic infections in CFS. Note that the aforementioned are not government 'deciders' like Ian, they are private researchers, with private practices free to do their own work, and the blood samples they test are from well established ME patients, often long term and more disabled - hence they sold the house and pay $100,000 for every test known to man out of desperation. This is why we see the difference. I don't believe Ian Lipkin put's the samples in the dishwasher, but it's obvious the patients samples he gets, clearly don't have ME.
Sadly for PWME, the misdiagnosed ME sufferers are declared as having ME anyway (by powers that want this), because the negative work is published under, or referred to with the ME/CFS moniker. This matters. The NIH and CDC and others use this negative work as 'proof' CFS remains a mystery and isn't associated to chronic infection - except it is when you look at the right cohort of patients. On that basis, the cheap CBT/GET can remain in place - so it has remained in place, just refer to NICE or CDC 'evidence base' for approved treatments (therapies) in CFS/ME & CFS.
Unfortunately when it comes to biomedical research, Dr Lipkin helped contribute towards (what looks like) a fraudulent retrovirus study (CFS patients biomedical fatigue was excluded from the 2011 paper with Alter). Re-read that again, people with biomedical fatigue were
excluded from being tested for a retrovirus.:thumbdown:. Think how that affects the outcome of the study for people with the biomedical disease ME!
This explains how the 2011 'negative paper result' was a lowly 3% or so positive for both CFS + controls for SFFV antibodies (thus one can falsely claim CFS is not associated to retroviruses), which is still millions of Americans making antibodies to a virus created by man in cancer research, that is meant to be in a lab, not the human population - a bit late now.
Now, Dr Lipkin after his promoted failure to detect a retrovirus in CFS (that removed people with biomedical fatigue) then links up with a research colleague Ms Hornig, of which he's published 40 papers with and a very nice lady she is too. They find no Cytokine inflammation after 3 years in people with unexplained chronic fatigue, citing an incredibly discovering new to Science in the press. What they didn't reveal, yet again, is the disabilities the patients have they draw the blood from. A quick forum check, reveals plenty of people have high cytokines (what ms Hornig said vanished after 3 years), in-fact, there are PWME with Cytokine Storms, who've been sick 30 years and are pouring out IFN-gamma. Further investigation shows these people are usually housebound, have other diseases they've developed since having ME, and have Lyme/POTS. (Remember, these actual ME folk, are removed from CFS research, because they are too ill). Bonkers, but true.
Problem 2:
Dr Montoya finds Retroviruses, that Mikovits + others found at 85%, that Dr Lipkin tried to disprove.
Dr Montoya only finds these in his patients, not Bateman's Fatigue Clinic samples. Very important finding.
Dr Bateman ends up promoting the SEID unlike multiple ME/Biomedical researchers who rejected it.
Dr Montoya produces a Cytokine assay that finds the opposite finding of Lipkin - another boo boo for the NIH.
Dr Montoya's research remains blocked from 2014 with the non post 3yr inflammation finding of Dr Lipkin published.
Americans rush their SEID to market, and announce they can't use the word ME as there is no evidence for it, telling no one, that Montoya's paper is blocked - nice one, but we saw that coming a mile off when Dr Montoya's fan fare announcement he'd have it published in around 8 weeks,suddenly fell silent, and the IOM bought the date of SEID forward from the original date. Again, we saw what they did there.
Problem 3:
An otherwise secret Email (revealed from an FOIA request), shows Dr Holgate contacts Wessely to ask him to select 'researchers' for a new look at CFS/ME. Wessely is a guy who denies ME exists and calls it the epitome of somatization and says in the press he is a constant victim of CFS patients, so dangerous he would feel safer in Afghanistan with Al-Queda- so that was a superb choice of Dr Holgate's to pick someone with no bias.
Dr Holgate also praises Ms Crawley in public, when it appears she is the female incarnation of Wessely. Crawley supports Wessely's views in Children - that ME does not exist separate from ME, and that ME can be treated with CBT and other mental health therapies. No scientific evidence exists for this hypothesis, and ME remains a potentially fatal disease, including CFS (Death certificates state 'CFS' in the UK).
Problem 4:
Dr Holgate comes out and says he thinks the British future approach will copy that of the IOM contract, in other words, non Inflammatory ME non infectious disease ME - and CFS with optional OI, and CFS with optional anything.
For Fatigue, this is fine, but Fatigue doesn't trap people in the homes/beds,stop people having a husband/wife/children, or stop them from working or having social contact with other humans. ME does.
In contrast, Fatigue is normal, healthy people feel fatigue everyday. Researching Fatigue is problematic to ME. ME sufferers are trapped by low grade brain inflammation, as the Japanese study showed and other markers have shown, such as dead ME patients having spinal inflammation (RIP those young people).
None of these ME patients with Ramsay ME with ear defenders on and eye masks will ever be studied, because it goes against the MRC/CDC model of Chronic Fatigue, and it supports Montoya's finding of retroviruses and Cancer (fatal) in American CFS patients. Ron Davies might well draw blood samples from his terribly affected son Whitney, but Whitney is unique his dad is a scientist. I imagine worldwide research in extreme cases of ME probably is statistically below 1% of the total number of diagnosed patients after nearly 50 years.
Does this mean CFS shouldn't be researched? No.
It means PWME have a different disease and for obvious reasons should not be included with CFS patients who have a non specific disease of any reason to have unexplained chronic fatigue (Fukuda Criteria) and unexplained chronic fatigue + PEM (UK, NHS CFS/ME criteria)..
Problem 5:
To find a consistent abnormality in science, the basics you learn is the patients must share pathology that ties them together as a collective group of people suffering from the same problems:
The first step is to test CFS/ME subsets: The MRC could have selected patients country wide who:
All have Chronic headache of new pattern/type/severity (what is meant to be part of ME)
All have Chronic Vertigo and Dizziness of Neurological Origin (rule out electrolyte disturbance etc)
All have Low Blood Volume - test them!
All have Brain Antibodies (Muscaranic/Nicotinic Acetylcholine/Adrenergic receptor antibodies etc).
All have POTS - increasingly linked to Lyme/Ehler' Danos Syndrome/MS
All have Cancer after their 'CFS' diagnosis, not before or you mix up post chemo brain chronic fatigue.
All have Heart Failure
All have Cardiac Arrhythmias (non sinus tachy) proven on ECG to separate from over sympathetic nerve arousal.
All have Seizures
All have Lyme disease including using Cytokine based LTT tests which the NHS reject.
All have history of severe acquired allergic reaction, new onset Asthma, anaphalactic shock.
All have IgG Subset deficiencies or other reasons for immune deficiency such as low NK cell function
All have QEEQ changes that fit with 'CFS' research that is not seen in classic epilepsy.
All have demonstrated cognitive dysfunction with lower IQ scores on testing that their general intellect level.
All have a proven sleep disorder including acquired Central Sleep Apnea
Once you do that, you can look for similarities and differences.
I will make a sportsperson's bet here: That in the next 5 years, other than non specific to 'CFS' findings....
t
he MRC won't do the above comprehensively because it removes the focus on stress-fatigue-mind-body and focuses on DISEASE that won't respond to fraud based therapy (CBT/GET) still promoted by people the MRC are allied to.
E.g. does group 1 (estimated to be at least 25% of all 'CFS' patients) have any association to other groups?
The MRC know this, this is basic first year University level thinking, yet with Phd's, they say, Iv'e got a great idea, lets get the blood samples from people with self reported fatigue only, who need nothing wrong with them at all, and see if we can find the cause of ME - the cause will never be found if you do that, just as it wouldn't in MS.
We will never get anywhere like this, than find multiple reasons for Fatigue, which we knew anyway, because of the heterogeneous groups.
The MRC will specialise in researching Fatigue in CFS/ME - not providing the cause of ME.
The final tragedy:
Researching 'Fatigue' won't unblock arteries and unkill people from Myocardial Infarction and Stroke, that is a serious long term risk factor for people with very low metabolic energy who:
Never Exercise
Turn to fat and sugar for energy increasing cholesterol that over time with oxidative stress will plaque up arteries.
Have chronic low grade inflammation leading to above.
Have infections known to affect the heart in some cases (Lyme and co-infections)
Have a stressful life!
Inflammation is the research the MRC
should be doing in people sick with ME for decades (not 6 months+), but won't because then you demonstrate ME is a vascular inflammatory disease tied to infection and autoimmunity - precisely what Crawley and the Wessely school are trying to
disprove, yet Crawley remains at the forefront of MRC research for CFS/ME. Dr Holgate congratulated her. It is, what it is.
The tentative hope:
The hope is for private, not state rehearsed compromised research in which the mind-body gang are always invited to the 'new ideas' party: They need to be expelled from the party, after decades of failure and a failed hypothesis. Still, they are here and they are
funded. WHO FUNDS THEM AND WHY IF THEIR HYPOTHESIS FAILURE IS DECADES LONG? (NB: With every wasted decade in research, is a wasted person's with ME's life).
Private research findings no matter how superb, however, can
easily be controlled for, by doing a a follow up negative study in CFS - hard to do in other diseases, because there you need biomarkers. Discovering the cause of ME, even at 5% of CFS/ME does not make Big Pharma happy, as then the patients want to know HOW they got infected, and WHO infected them, if they never got bitten by a tick, had a blood transfusion, or even sexual contact with another - then the only realistic possibility left other than congenital transmission is airborne pathogen such as virus of some sort.
If the MRC studied the
real epidemic of ME/Lyme, I would fully support them, 100%, but you can't research something your know existed in the 1990's and was killing ME patients back then (MRC files discuss deaths of ME patients in the UK).
And so for classified reasons, the idea of Fatigue for ME was proposed, installed, pampered and polished with the British and Americans creating CFS together - both military allies. Allies who dabbled in post WWII Tick Research traded for freedom of Nazi Scientists in Germany and War Criminals in Japan who dissected people when alive. See Unit 731 in Japan, and Plum Island in USA of which was born from the information gathered from Japan and Germany to weaponise ticks with
viruses to carry disease (copied from the Japanese).
And so Fatigue it remains at the forefront of the MRC's research portfolio, or Fatigue with other autoimmune disorders. (Pointless as ME is ME, not another disorder). People don't research HIV by studying fatigue in MS do they? No. They study AIDS patients and AIDS patients only.
The light at the end of the tunnel does exist, if the exit is unblocked:
In contrast to the MRC, the group in America such as the OMI (now have Dr Bell on board) and others have some good basis to build upon, although it will take years to publish and large scale studies aren't possible due to lack of funds.
Catch 22.
The government bodies hold all the cards, and are only focussing on researching people with self reported chronic fatigue, not the diseases that ME/Chronic Lyme causes, by not treating it.
Hence in conclusion, I am not confident that in 5 years time, the MRC or any other research group linked to the state will have expelled the people who have lead patients to their graves (no treatment for fatal disorder = death) and who will not create subsets based on disease based signs. That's all it takes, common sense approach, and to drop the obsession with Fatigue.
But we knew that in the 1990's once CFS was conceived and started producing F48.0 babies with the help of the MRC and their wonderful PACE study.
Will the pen pushers who promoted CBT/GET as 'evidence based' (with no scientific evidence) ever be forgiven or simply jailed? I guess it's hard to know until the numbers of patients deaths are statistically recorded or predicted worldwide. It's hard to know at this stage if over decades 1% of patients succumb to severe ME (within those diagnosed with Ramsay ME) or 20%. If we're talking 100 million infected worldwide with Lyme (not with disease signs, just infected), that may be quite a novel multi spectrum disease holocaust they've created, accidentally as no one ever complained or protested that ME or Chronic Lyme wasn't Somatizing did they, certainly not the patients... So it was all an innocent mistake..
I personally think it'll be De Meirleir and private American researchers who discover the mitochondrial infection-autoimmune-genetic-congenital slow onset ME disease, and not any British group of Fatigue researchers who like to compare 'CFS' to other disorders with Fatigue, not focus on the actual disease at hand.
