Lipkin and Hornig ME/CFS Monster Study: Microbes, Immunity & Complex Data

[skipskip30]

I am surprised by the negative vibes here.

This is an ambitious study which should lead to a deeper understanding of ME/CFS.
I don't think anyone is saying it will tell us everything but it could be a very telling study.

It's one of the biggest studies ever into ME and there seems to be criticism here because it's not big enough ?

Combine this study with the NIH and the OMF and maybe a picture will begin to form. I don't know, but it's a lot better than no study.

Its pretty strange and short sighted to be negative about this study. Everything has to start somewhere and lipkin can't do everything at once.

 

[duncan]

Identifying potentially large flaws in a study is strange, short-sighted and negative?

I thought it was being realistic.

We need good Science that is encompassing and comprehensive - that holds up to scrutiny.

I am highly appreciative of Lipkin's efforts. I am having trouble, though, reconciling his goals with the omissions I've noted.

 

[alicec]

but your first statement is just speculation. If Lyme is involved in many cases, I doubt it will be found by this study.

It is reasonable speculation since those sites are major sources of pathogens.

You are right that it won't include vector borne sources but studying those directly would involve taking many invasive tissue samples, a complication I can understand they might not want to introduce.

The metabolomics and proteomic studies are likely to pick up signatures of intracellular pathogens.

 

[BurnA]

Identifying potentially large flaws in a study is strange, short-sighted and negative?

I don't think these observations can be described as flaws, or potential flaws. But it depends what the study is claiming.

 

[Comet]

And not a hint of psych anywhere. Seems like this is the sort of thing we have been fighting for. Plus, it shows Hornig and Lipkin are committed to us.

I also was thinking that we have no idea who is behind our avatars. It could be that this thread inspires a huge donation! You never know.

I don't want to go off-topic, but can anyone clarify for me if we ever got the news from them that had been expected in the Spring of 2016, please?

 

[duncan]

don't think these observations can be described as flaws, or potential flaws

Agreed. Poor word choice on my part. Oversights, perhaps? Omissions?

How about: If it were possible, it would be nice if the study were inclusive, i.e., major bacteria and parasitic pathogens were also primary targets.

This is why I am such a fan of the Stanford efforts. Admittedly, theirs is a high standard to match.

 

[mango]

I don't want to go off-topic, but can anyone clarify for me if we ever get the news from them that had been expected in the Spring of 2016, please?

In the Solve ME/CFS Initiative newsletter that I received earlier tonight it said:

The webinar with Mady Hornig, MA, MD, originally scheduled for August 18 has been postponed in order to include not-yet-released study findings. We will let you know once this webinar has been rescheduled.

 

[Research 1st]

Why don´t they look at pathogenic bacteria as well as viruses? I´m not too bothered about this study not getting funded if they are only going to look at half the picture, especially as the other areas are already being covered by Davis, Hanson and KDM.

Good question. Well firstly, pathogenic bacteria are associated to Chronic Lyme and potentially dementia, both at epidemic levels now irrespective of the causative agent.

The people you talk of are pro patient, not pro self. These kind of people never get to the very top and are always ignored by the gate keepers. That is why Ron Davis and his breakthrough bio-tech is not funded as he should be, because he re opens Pandora's box that closed with Judy Mikovits and the WPI saga. Because of what they unearthed, (not XMRV, but the lab safety knowledge that what was presumed safe, isn't), now no government body will give Ron Davis the tens of millions he deserves) because the truth is most inconvenient to them. It doesn't take a genius to work out that infection and infection mediated autoimmunity can slam Mitochondria. Ultimately, I believe this is why Ron Davis isn't robustly and routinely now funded, his 'results' would allow for other scientists, e.g. infectious disease specialists to use any potential Mitochondrial assay he has hold of, and have fun seeing what's inside these 'CFS' sufferers, who would then be novel Mito-fatigue patients, and no longer 'CFS' using no tests! This is political suicide for the control of CFS to remain as it is. Validating novel pathogen autoimmune mito damage in ME (CFS) it risks finding not only Lyme, but HERV's and potentially Xenotropic Cancer industry infections from labs. (SFFV etc), what they put the lid on in 2011.

Lets see if we have evidence of flip flopping, post XMRV disaster. We have one small piece of evidence. The expert 'Virus Hunter' Dr Ian Lipkin briefly reported there are 85% positive retroviruses in Dr Jose Montoya's CFS samples but then, less to his credit, immediately dropped the idea of disclosing what type of virus or finding out what this means, as it likely ''won't work out'' - (non Scientific claim as it predicts results without performing any Science!).

Medico politics is a worldwide phenomena in the developed and richest, West. A dirty game of the fusion of cost vs ethics (being ethical is too expensive if a huge amount of patients need expensive medical care funded, in society, for life, because they are crippled by neuro invasive pathogens). That is what this is about, money and not having enough to go round to deliver social care for the severe ME CFS Lyme patients in wider society who need nursing, but end up nursed by the Husband or parents, who then can't work, so become poor, and the whole family is ruined over time, via chronic ME, CFS, Lyme.

So no. Keeping at the forefront of Science with biomedical ME research doesn't win you grant awards, it gets you isolated, and ultimately pushed out - as ME genetic expert from the UK, Dr Kerr would agree. Sticking your beak out (As KDM, Judy Mikovits, Dr Montoya, Ron Davis etc al) do for the patients makes you unpopular with the system. Dr Montoya publicly admitted CFS patients risk increase rates of cancers). Where is his May, 2014 paper on CFS high level inflammation? Never published. The Dr Ian Lipkin on absence of inflammation after 3 years- is published. Most Interesting coincidence.

Being a KDM or Dr Ron Davis gets you no invite to the Gov't annual Christmas party. What gets you invited is always talking about the mind-body circle, that puts you at the forefront of 'CDC' Viral disease branch research (misnomer) aka Fatigue based research (non ME). That deranged mindset of the system, makes sure that the IOM uses no ME experts, to redefine CFS, to conclude, they can't use the word 'ME' (for SEID) as they can't find any inflammation. (In CFS the truth, in ME, a lie). So SEID replaces CFS, and ME doesn't exist. Precisely what the government ordered. They knew damn well not to invite or involve Key ME biomedical researchers to 'redefine CFS', they knew damn well they would then study genuine ME patients (with inflammation), and push 'CFS' into the shadows. That was not permitted to happen and the outcome of the SEID proves this. 1) Not a single biomarker, 2) No one has to have a TILT test - would have found high rates of Dysautonomia - neuro disease evidence 3) O.I is optional for SEID (O.I is actually a hallmark of ME).....yet they conclude they can't use the word. Most interesting outcome, incapable of supporting a hallmark trait of ME, but claiming SEID is a disease that describes CFS, formally known as ME.

Over the last 30 years in history, unspeakable puppets have been put in charge of throwing ME patients under the bus (as unexplained, unrelated fatigue syndromes - aka USA CFS was now ''the new name for ME''). These folk, in multiple countries are put there for a reason and that is because they tow the line to get OTHER studies that interest them funded, to further then own careers and own interests which wins them MORE grant money: A cycle.

No government body in 2016 or beyond will ever, willingly demonstrate pathogenic HERV's in CFS, because it opens the door for: Autism, FMS, and Chronic Lyme and a whole host of other neglected disorders as novel autoimmune diseases tooo. We all know that PWCFS report other conditions alongside CFS as time passes. (FMS, POTS, Ehler's Danlos, Diabetes, Cancer, Peripheral Neuropathy) but...these diseases take time to develop in CFS, because, the untreated disease (clearly) damages the immune system and the body. This fact, is not discussed in any Gov't literature in 'CFS' whatsoever, with full concentration on Fatigue, Sleep Hygiene, CBT and gradual increase in activity (all meaningless BS). In ME (as CFS). The fact is, a severe chronic ME sufferer age 20, is a different person age 50. 30 years of chronic severe ME ruins your body as it does in all other autoimmune, inflammatory, infectious diseases that AREN'T TREATED.

So the conditions that are all different are all the same, potentially because of the same class of infection, or multiple classes of infection:

Try and imagine all the modern syndromes and diseases that have similar (but no the same) presentation, actually being related by a transmittable pathogen that requires: Genes, Infection, Environment to 'get you'. We'd be talking 100's of millions of people in just USA and Europe. That would obliterate HIV in terms of numbers. No Gov't will accept this, ever. So they hold station, and psychiatry 'absorbs' a lot of the undiagnosed and the spillover, soaking up more numbers and creating infection based psych as psyh behavioral. That's what this is about, control the situation, don't cause panic or spread fear (there is no effective treatment). So a happy jolly face of CFS appears ''most people recover in months or years'' - what patients have found out, to be a total fabrication. Realistically 5-10% of 'CFS' patients are estimated to recover, not ''most people''.

Chronic Autoimmune diseases based on Infection (or simply a trigger) will need medications, for life. No country can afford this when numbers are huge, and more importantly, tens of millions of people, in each developed country, infected for life, previously neglected since the 1970's and beyond, presumed mentally ill. The public would soon realize what's happened, over time,and revolt.

Regarding Chronic Lyme, that isn't 4 weeks of Doxycycline Lyme. American cronies who push the useless 2-tier Borrelia, 1 strain (B31) test are on record (via FOIA requests that took 5 years to obtain), being caught with their pants down admitting the Lyme patient community cannot be won over by Science and other measures are needed to control the situation. No news media ran this story, as it exposes rank corruption. Other measures means disinformation, clearly, as they admit 'Science' can't win. As Lyme is a chronic infection, and if Science cannot suffice, that what will? Muddying the waters, and maintaining the status quo. Precisely what has happened with the management of 'Lyme disease' and the denial of Chronic Lyme too. Numbers continue to rise, and rise and rise and still no effective response, no new tests, no new ideas - just hold station.

Patients in 2017 will demand to know what activates the HERV's found in multiple human chronic inflammatory diseases not just ME CFS. The logical answer being other infections (Retroviral Dual Infections, such as EBV) or even animal contaminants from Cancer research and cell lines contaminated that are in vaccines. The BS answer being, who cares, next question - the preferred response from the state.

One example of a culprit, is the discovery of SFFV antibodies found in around 3% of Dr Alter/ Dr Lipkin's ''CFS'' patients (non ME) and healthy controls. (I'll explain in a second how I know they didn't have ME), but lets stick to the apparently meaningless figure of ''only'' 3% of the general public's bodies 'recognizing', e.g. producing antibodies to a virus that is meant to never leave a lab, e.g. the general public (and no human) are meant to have it. The 'negative' paper below:

Source: http://www.ncbi.nlm.nih.gov/pubmed/22991430

3% in using an experimental, sub-optimal, non multi centre used, novel, unvalidated assay (2011, MLV study) but....already detecting animal Frankenstein antibodies to these man made lab accidents, in around 9.3 million Americans. Humans potentially spreading this potential exogenous retrovirus around (sex, blood, sneezing etc). That is just one retrovirus looked at. Notice the retroviral research of CFS fell entirely silent about that antibody SFFV finding immediately afterwards (Judy Mikovits was gagged by the feds for 4 years so could say nothing), so basically they ignored what they found because they are told to, by the Scientific gangsters who run the CFS show, sorry boys and girls, that ain't gonna happen stick with Fatigue syndromes of non-single cause.

The Dr Ian Lipkin group found in their study, inflammation in CFS halts after 3 years, a bizarre finding when other ME researchers generally find the opposite finding, to the extent patients themselves can now order Cytokine panels and look aghast that they are living on a day to day basis in a 'Cytokine Storm'' worsened by stress (such as exercise) - as Dr Nancy Klimas demonstrated years ago. Initially when I read that Dr Lipkin/Dr Horning paper I thought was a hatchet job, until I realized it was the isolated truth.

How? Because their CFS patients didn't have high cytokines after 3 years. How is this possible? Study design.
The rules were that ME sufferers (called CFS in America) who displayed signs of ANY existing organic disease are excluded from the study (a common phenomena of all Fukuda CFS criteria studies). So if you have Fatigue? You're in, if you display signs of chronic ME (such as developing POTS, Autoimmune Thyroid disease, Cancer, Infections that cause Fatigue ontop of your ME? - You're out of the study, and that is how no inflammation is found after 3 years.

People like KDM, they don't randomly pick Fukuda CFS cohorts for their biomedical research (as Gov't do), they select people they feel, probably, have classic ME, hence their findings are the opposite of others who don't know how to pick an ME sufferer, cannot pick one (due to Fukuda CFS Criteria) or refuse to pick one (PACE trial crew) due to bias of needing a psych agenda for CFS,hence they use even weaker fatigue criteria that Fukuda CFS and chose Oxford F48.0 which allows for depression when diagnosed with their variant of CFS, and allows for a history of previous mental disorder.

A lie is a 1/2 truth in ME research, because the truth about CFS research is all you need to do is get a group of people who say they have chronic, unexplained CF, using standard exclusionary tests and you magically become an ''ME'' patient overnight. Half of that is true, medically.

Clever medico-politics allows for this. Hence in the CF Dr Ian Lipkin study or any other Government grant study past, present or future on CFS, well... no Lyme, Retrovirus, or HERV is found is it or if it is, it's not going to be further discussed (as happened with Dr Montoya's 85% positive retrovirus patients) Generally speaking outside the USA too, by not ruffling feathers, globally, scientists get millions of dollars in research funding for other studies not involving CFS deemed very important (such as Ebola) you gain more power, and you retire a very happy bunny feeling highly respected and 'da man', because you did a lot of good work, and 'CFS' was just a bump in the road.

Biomedical ME research, is a career in chess, and genuine ME research (because of who controls grant funding), and not faux research (PACE) destroys your career or at least pushes you outside the locus of control and influence.

Until then, the people who caused this? They're long retired. The financial investors? They're in their superyachts sailing into the sunshine with a 19yr old Russian brunette on their elbow and a vintage bottle of Dom Perignon in the other. This is how life works. The weak succumb to the powerful, until someone with a soul steps in and says ''no more''.

History always repeats itself and man is generally selfish and vile. Science has no exception to the rule, when Science is openly flirting with politicians and their ego's who control health agency policy worldwide. Hence, no massive ME biomedcal funding (despite more people than HIV), no real research to end all research studies agreed to that don't use Fukuda CFS or focus on Fatigue (to actually find something in the correct group of patients) and order is restored. Order as chaos.

What could possibly go wrong if they've being doing this since 1988..... what's 28 years anyway of failed psychosomatic hypothesis for an infections onset autoimmune disease? That's how you Control Disease apparently when you at the Centre of Disease Control.

 

[Comet]

In the Solve ME/CFS Initiative newsletter that I received earlier tonight it said:

The webinar with Mady Hornig, MA, MD, originally scheduled for August 18 has been postponed in order to include not-yet-released study findings. We will let you know once this webinar has been rescheduled.

Thank you. Sounds interesting!

 

[eastcoast12]

I'm seriously not following the negativity. They're looking at the microbiome of sick and controls. They're not looking at every single pathogen that may or may not have something to do it. If you want that to happen turn the computer off get out your check book and write s check for $20 mil sit back and wait for the results. This study has the potential to create working therapies, drugs, treatments and mayb even cause.

 

[Forbin]

Just my opinion folks, so don't get mad...

At this point in time, if I had to choose the research team I thought was most likely to actually crack ME/CFS, it would be Lipkin, Hornig and the CII.

 

[Esther12]

Just my opinion folks, so don't get mad...

At this point in time, if I had to choose the research team I thought was most likely to actually crack ME/CFS, it would be Lipkin, Hornig and the CII.

It's nice to have a range of people taking slightly different approaches, but we're definitely lucky to have researchers like Lipkin and Hornig working on this illness.

 

[eastcoast12]

If my comment came across as rude well deal with it. No in playing. That wasn't my intention. My brain isn't cooperating today and that Es the best I could come up with. Sorry bout that

 

[JaimeS]

It sounds really exciting! Go, researchers, go! <3

 

[Sasha]

It sounds really exciting! Go, researchers, go! <3

I had to google "<3" and find it's supposed to be a heart. I always thought it was a bare bottom wearing a dunce's hat, and wondered why you were applying it to this study, so that's a relief!

 

[AndyPR]

I had to google "<3" and find it's supposed to be a heart. I always thought it was a bare bottom wearing a dunce's hat, and wondered why you were applying it to this study, so that's a relief!

I always thought that it looked like a two scoop icecream cone...

 

[simeyss]

I don't understand the negativity here either. No single study will be perfect, nor will it be able to look at everything. This study is setting out to examine a huge range of areas and, coupled with OMF's work (& others), we've now got some really amazing science underway. This is what we've always wanted. Personally, I'm really excited by this study, and it's inspired me to go make a donation! Go CII!

 

[actup]

There is so little we really understand about our me/cfs, seid, lyme illnesses. Heavy hitters like Ian Lipkin and Mady Hornig with their world class labs need to be at least partially funded by patients and their families. Even Ian Lipkin as a world renowned virologist can't get the measly funding he needs from the nih. This simple fact clearly demonstrates
(to me anyway) the negative me/cfs policy stance the nih has taken.

Btw, none of my family members will contribute to these causes because me/cfs is a "trash basket" diagnosis. I believe they and many others will help out when we have some large scale definitive lab results from the Microbe Discovery Project.

 

[Forbin]

Personally, I'm really excited by this study, and it's inspired me to go make a donation! Go CII!

Your post inspired me to put some (more) money where my mouth is and make another donation. Thanks!

-------------------

P.S. I'm pretty sure that <3 is the international symbol for "Hercule Poirot is taking a nap."

[ Actually, this is "Milo Perrier" from "Murder By Death," but close enough. ]

 

[msf]

This study is one of the biggest and most rigorous ever and you aren't bothered about it ?
I don't understand your comment.
The OMF study is great but it's 20 Patients at one time point AFAIK.
Hansons study doesn't come close in terms of scope.
KDM ? Are you joking?

As patients we need as much good quality research as possible, this is top quality.

So you are allowed to criticise KDM´s research, but I am not allowed to criticise Lipkin´s?

I don´t understand your position.

I should perhaps have added a word, ´especially because the other areas are jointly being covered by Davis, Hanson, and KDM.´ Is that not the case? The only thing I can think of that isn´t being covered is the study of the mouth microbiome, but I do not expect that to turn up much.