What’s up in 2014? Federal funding still sucks, but it’s clear that the Research Foundations and non-profits are finding a way. As the list of studies or trials ending in 2014 indicates, we’re going to learn a lot about chronic fatigue syndrome this year.
Treatment
UK Rituximab Trial Underway – Invest in ME has raised 280,000 pounds for the 350,000 pound UK Rituximab trial. The trial will be initiated following the Invest in ME conference this year.
Lots of treatment initiatives are underway in 2014
Pridgen FM Antiviral Study Results to be Presented Soon – Will Pridgen’s antiviral approach to fibromyalgia revolutionize the way fibromyalgia is treated? The results of his multi-center Valtrex/Celecoxib fibromyalgia study are released on March 14th, hopefully paving the way for Phase III studies. Find out more about the study here.
CDC Multi-Site Experts Study Identifies Effective Treatments – Dr. Bateman’s report at the IACFS/ME on treatment effectiveness from the multi-site trial suggests the CDC may be ready in the not too distant future to report on what works best for ME/CFS experts. That report will hopefully open up treatment options for many patients not seeing those experts.
Major Electronic Database for Patients: OpenMedNet From the Open Medicine Institute Begins – ME/CFS patients will be able to enter treatment success and failure data – giving researchers access to important data – as this sophisticated system opens probably in the first quarter of this year. “This integrated, cloud-based system is designed to streamline data collection, sharing, and optimization and is ideal for clinical trial/research protocol execution.”
Clinical Data Analyses to Spur Studies on Effective Treatments – Simmaron Research Foundation is analyzing the effectiveness of treatments done at Dr. Peterson’s practice to generate enough pilot data to publish and get grants for larger studies. Their first data analysis includes Cidofovir, Ampligen and IVIG effectiveness. Documenting the success of these treatments and making them available for the right types of patients would be huge not just for them, but for how the disease is perceived.
Methylation Got You Down? – Crowdfunding efforts – are underway for a full-placebo-controlled clinical trial to study B12 and Folate supplementation in patients with and without a MTHFR B12 and Folate have been shown to reduce fatigue and cognitive symptoms in 20-50% of neuro-immune disease patients.
Immunotherapy to Target Natural Killer Cells – Is a fix for the natural killer cell problems endemic in ME/CFS in our future? Dr. Klimas’ Neuro-Immune Institute at Nova Southeastern University is confident that immunotherapy targeted at the IL-15 cytokine and NK cells will ultimately qualify for clinical trials.
HealClick Continues to Improve Matching Data – Given enough funding HealClick improves its matching data algorythms allowing people with ME/CFS, FM and other disorder find their ‘match’ and hopefully uncover treatments that work for them.
Mystery Drug Combo That Might Help ME/CFS Has Been Found. We Await Announcement – the CAA’s Biovista project suggested that a drug combination never tried before in ME/CFS just might work. They’re keeping mum on what’s in that combo so far, but sometime this year we expect some news.
Drug/Supplement Trial Underway to Increase Energy and Improve Cognition – A really intriguing trial combines traditional and alternative practices to see if low dose Ritalin in combination with a vitamin, antioxidant, amino acid, and therapeutic dosages of key nutrients that support brain and mitochondrial functioning adds up to increased cognition and energy.
Antioxidant Trial to Improve Brain Functioning Finishes Up – Dr. Shungu’s studies suggest levels of glutathione, the main antioxidant in the body, are greatly reduced (36% less than normal) in the brains of people with chronic fatigue syndrome. In this study he gives N-acetylcysteine (NAC) (2000 mgs) for four weeks to ME/CFS patients and then uses magnetic resonance spectroscopy to determine if their brain GSH levels normalize. He does blood testing to see if their oxidative stress levels go down, and administers questionnaires to see if their symptoms get better.
Uber Anti-Herpesvirus Drug (CMX001) Moves Closer to Approval – This uber herpesvirus (and other virus) drug employing a new mechanism designed to shoot it deep into the body to fight infections is undergoing Phase III trials. A Cfidovir analogue, this drug could be big news for ME/CFS patients with herpesvirus infection who are able to afford and get to it once it gets approved. The drug company that produces it just went public.
Hepatitis Drugs That Might Help Come on the Market – Dr. Chia has been waiting for these drugs for a while and now here they are. Dr. Chia believes three new Hepatitis C antiviral drugs coming on the market during 2014 could help with enteroviral infections in ME/CFS. One is very, very (very) expensive. No word on the other two. Dr. Chia will present two talks at the IACFS/ME conference.
The Brain
Spinal Fluid Study Attempts to Uncover Cause of Neurological Dysfunction Part I – Spinal fluid is hard to get, but Dr. Peterson’s been collecting it for years and he sent it all the way to Australia give Dr. Sonya Marshall-Gradisnuk’s lab a crack at it. As a complement to the Lipkin study (see below) seeking to identify pathogens in spinal fluid, this study assessed the role of miRNAs and immune abnormalities in CFS patients compared to controls. These groundbreaking dual investigations seek to explain the neurological symptoms found in ME/CFS. It will be completed in early 2014.
With Stanford exploring new technologies expect the brain to show up big over the next year or so.
Spinal Fluid Study Attempts to Uncover Cause of Neurological Dysfunction Part II – This Lipkin study used samples from the Simmaron Research Foundation to detect pathogens and pathogenic mechanisms in The Center for Infection and Immunity at Columbia University. Lipkin found ‘pathogenic abnormalities’; we’ll see what they were soon. Results should be published in early 2014.
Brain Study Seeks to Identify Neurological Subset in Chronic Fatigue Syndrome – This fascinating study determines whether ME/CFS patients without mood disorders have more, that’s right, more problems in the brain than ME/CFS patients with mood disorders. Dr. Natelson will use cognitive tests, spinal fluid tests, MRIs, blood flow tests, and lactate level tests. A positive result would set the stage for the recognition of a distinct neurological subset of people with ME/CFS who do not have a mood disorder.
EEG Findings Uncover Problems in the Deep Brain – EEG readings made by a Stanford team suggest problems are present in deep brain areas such as the thalamus, hypothalamus, cerebellum, and other organs that make up the brainstem. These areas specialize in producing fast unconscious reactions. This could be huge, but the Stanford team is also using more advanced brain analyses such as advanced LORETA methods, SnPM, and other new analytic techniques. Expect to hear more about these in the future
Bugs
DNA Virus Reactivation Provides Hope for Treatments – last year the WPI found that dendritic cells may be reactivating ancient viruses embedded in ME/CFS patients’ DNA. More detailed work on this viral reactivation continues. Treatments that are being developed to fight a similar kind of viral reactivation in MS could provide help someday.
“Antibody Barcode” for ME/CFS Being Developed– Stephen Elledge of Harvard Medical School is developing an “antibody barcode” in this CFIDS Association Biobank study which will reveal all the viruses a person has been infected with over time. This 180 person study is underway now and will be complete late this year or early next year.
Next Generation Sequencing Reveals Viruses Present in Blood Plasma – this CFIDS Association study found no novel or highly divergent viruses in people with ME/CFS, but it did pick up viruses from 19 different virus families. The presence of viruses in the blood could indicate an active infection. Further research using healthy controls is needed
Cerebrospinal Fluid Pathogen Study Uncovers Role of Pathogens in ME/CFS Patients with Lymphoma – This Simmaron Research Foundation study parallels the Columbia University investigation of the cerebrospinal fluid of a subset of ME/CFS patients who went on to develop lymphoma or other cancers. Results should be published early 2014.
Post-Infectious Cardiomyopathy Study Focuses on the Heart – This Simmaron Research Foundation study investigates four subjects from Northern Nevada who developed a form of dilated cardiomyopathy with an unknown cause.
Neuroendocrine and Immune
Ambitious Extended Good Day/Bad Day Study Seeks to Develop Custom Gene Expression Panel for Diagnosis – In this expanded version of the ‘Good Day/Bad Day’ study which found that people with ME/CFS displayed distinct immune abnormalities during their ‘bad’ days, the NSU Klimas/Broderick/Fletcher group attempts to get at the immune, endocrine, and nervous system causes of those immune abnormalities. They plan to develop a custom gene expression panel that easily distinguishes ME/CFS from other diseases. That panel would end the worries about the inaccuracy of symptom-based definitions, identify key biological aspects of ME/CFS for future research, and perhaps even provide targets for drug therapies.
Biomarkers are a common theme in immune research
Epigenetics Study Reveals Immune Changes – Infections, trauma, and environmental stressors can all alter the expression of genes in our body. CFIDS Association of America researcher Patrick McGowan has found three immune genes whose expression has been altered by some past event in patients with ME/CFS. The results are being prepared for publication.
Lasker Prize Winner May Have Found Biomarker for ME/CFS – Michael Houghton has identified a possible biomarker for ME/CFS. In this 179 person CFIDS Association BioBank study, he’ll determine if he was right. The study is proceeding now.
NCNED Biomarker Study Down Under – Not so fast Micheal Houghton, Dr. Sonya Marshall-Gradisnuk’s team thinks they may have identified an immune biomarker as well. This study began last year.
Big WPI Study Hunts for Immune Biomarker – NIH funding ends in 2014 for this large study which attempts to confirm a gene expression biomarker, defects in the immune interferon system, HLA gene abnormalities, and more are present. The study will provide information necessary to identify subsets and hopefully elucidate treatment approaches.
Mast Cell Mouse Study Seeks to Validate Mast Cell Induced Brain Changes and Fatigue – Dr. Theoharides believes that stress activates mast cells causing them to pour out pro-inflammatory molecules which then cause ME/CFS. This very long mouse study puts mice into a fatigued state and then examines the blood brain barrier, brain expression of all sorts of immune markers, and then determines if a flavinoid formulation can increase endurance and reverse the brain anomalies.
Gut
“Leaky Gut” Whacks ME/CFS Patients? – Dr. Fletcher determines if microbial translocation from the gut (leaky gut) can help explain the ‘bad days’ ME/CFS patients experience, and will relate microbial translocation to immune, autonomic, and neuroendocrine markers.
Bad Gut Bacteria Causes Changes in Gene Expression in ME/CFS – Rebecca Hansen will determine if bacteria in the gut and the blood are different in people with ME/CFS, if gene expression in their gut cells is different, and if lactoferrin in fecal samples indicates an inflammatory state is present in the gut.
Exercise
My guess is that exercise studies will get at the heart of ME/CFS quicker than any other type of study, and several big ones are underway or finishing up this year.
Exercise Throws Rapid Stress Response System Out of Whack – Dr. Fletcher of the Univ. of Miami uses gene expression, proteomics, and clinical data to show that the rapid response to exercise stress is, er… a bit compromised in ME/CFS.
Exercise studies continue to feature prominently in ME/CFS research
System Breakdown After Exercise Identified – Proposing that ME/CFS results from breakdowns in how the major regulatory systems in the body interact, the Broderick/Klimas team ‘stimulated’ the stress response (neuroendocrine/immune systems) by whacking ME/CFS patients with exercise and then used molecular profiling (gene expression?) to determine how those systems fell apart. They then created an integrated model or map they’ll run simulations on to predict which therapies could return that system to normal. An ambitious project indeed.
We have heard that this study shows that the autonomic nervous system falls apart first during exercise and then triggers an immune cascade that causes the symptoms in ME/CFS. Hopefully we’ll hear more about that this year.
Big Mt Sinai CFS Research Center Exercise Study – the Center continues with its massive multidimensional ME/CFS exercise study.
Exercise Results in Metabolic Breakdown In ME/CFS – Rebecca Hansen of Ithaca University throws her hat into the ring with a study showing that the two day repeat exercise tests show a profound reduction in the ability to produce energy in chronic fatigue syndrome patients after exercise. Exercise physiologists shudder, throw their hands up in the air and exclaim that SOMETHING must be wrong with that machine.
Figuring Out Fatigue I – In an extension of the Light’s exciting older study showing that exercise produced rapid increases in fatigue and sympathetic nervous system and immune sensing receptors (remember the bar charts?) lasting at least 48 hours in ME/CFS patients but not in healthy controls, this study will use full genomic arrays this time (as well as targeted ones) and add genes such as neuropeptide Y (documented abnormality in ME/CFS), HPA axis receptors and more. They’ll attempt to produce a gene expression biomarker and add cancer-related fatigue and major depressive disorder to the list of disorders ME/CFS differs from (this study has been published), and determine subsets inside ME/CFS.
Figuring Out Fatigue II – The Lights have said they want to do for fatigue what has been done for pain. In this large study they’re uncovering how fatigue occurs at the molecular level. Thus far their studies suggest the molecular receptors that detect muscle metabolite are much, much more active in ME/CFS than normal. The study will use PCR, calcium imaging, immunohistochemistry, metabolite activated currents and more to nail down how fatigue signals in the muscles are produced and then relayed to the brain. The implications for the disease for which the term ‘post-exertional malaise’ was coined are obvious. They believe the study will lead to ‘rational, targeted therapies’ for severely fatiguing conditions.
Genetics
Going Where Man Has Never Gone Before – The OMI’s big gene study using the latest technology (developed, no doubt, in Ron Davis’s own lab) peers, for the first time, into the most complex part of our genome which feature the immune system (HLA genes). Will this first look into HLA genes crack ME/CFS? Ron Davis thinks it could and we’ll find out fairly soon.This study moved fast; it was begun last year and is due to finish up early this year.
Everything
The Everything Study – Finally someone is doing the ‘everything’ study. In the ‘everything’ study the OMI throws just about everything at 20 ME/CFS patients in an attempt to get the whole ME/CFS picture. This study could tell us much about what’s gone wrong and how. These patients will get:
Epidemiology
The Chronic Fatigue Initiatives two big (big) epidemiology projects are finishing up.
- A 1,000 patient study using patients from ME/CFS experts will establish what ME/CFS really looks like symptom-wise, what other types of disorders it usually appears with, how it proceeds over time and how effective ‘interventions’ (treatments) are. This study will dig deeper into what ME/CFS looks like, how serious it is, how difficult it is to treat, etc. than any before it.
- A Harvard study will take advantage of a huge public health data base to see in whom the disease appears, how it proceeds and what kind of environmental exposures (including infection) might set it off.
Simmaron
WOW!! This all looks very exciting and promising.
I love that Everything study! 🙂
I don’t want to dishearten anyone but we all need to try and make a positive contribution to help serious medical scientists, find a cure or at least a treatment for this terrible disease
I was diagnosed 20 years ago when I was 18, and have donated to research for 17 years and raised further money and written a lot of letters. unfortunately very few patients are doing anything to help the situation. we are not at the stage where any treatments or investigations are really worth pursuing. by lavishing support upon snake oil salesmen, we are cruelly betraying the relatively small group of researchers, who are just as eager to find a proper treatment or cure as we are.
the budget in the us has been at around 6 million dollars for many years
some of this has been misappropriated or misspent on research that is not in the interests of patients.
I believe that the budget has been lowered a while ago to 5 million
I seriously urge all fellow patients to set aside a little money every month to support worthy researchers and scientists in this field
they are being cruelly ignored, sidelined and marginalized by the government and other governments and medical establishments like in the UK,
please everyone
try and help the research situation and the researchers who are desparately crying out for our financial assistance
we owe it to them, as they are our only hope of an improved quality of life
best wishes
Jeremy bearman
Another area which I will be investigating at considerable expense in March is Dr. Cheney’s work in which he is combining work done by Dr. Shoemaker and Dr Kanye using VIP and phospholipid compounds. I will be glad to provide commentary on my experiences.
Please do provide commentary!
Indeed!
Despite the fanfare and exciting sounding studies, having worked with two of the “top doctors” in CFS I’ve slowly deteriorated over the last 7 years( which seems like a common scenario). It’s my feeling I’ll be long gone before a cure for this horrible disease is ever found.
Greg
Not so fast, Greg. I got sick in 1978 with CFS right after I came down with Pericarditis just after the birth of my first baby. Then the symptoms seemed to decrease and I had another child in 1980. After that birth, I became very sick with all the flu-like symptoms typical of CFS and have been sick ever since.
So, my point is, don’t give up. I have been sick a very long time. I have despaired at times, but I never give up hope. The medical community is responding to us in ways that were totally unheard of when I first became ill and no one had heard of anything like this illness until 1984 and the Tahoe outbreak occurred.
Hang in there. We may see real progress and help coming. I have at times truly believed that I would be long gone before anyone discovered what I have been suffering with, but …. perhaps not. Just maybe there will be answers at last.
Hang in there, Greg. Some people get well or at least better after years of decline. Sometimes the turnarounds are simply amazing.
Me too, My Landlord does not make it easy for me as I have not left my house in 8 years. He will not allow Medicaid to put in a ramp as I am wheelchair bound.
He did say he’d help so long as I go down to the grave yard and put myself in a hole.
Thanks Cort, and everyone else, but its too late for me, I live in a house riddled with mold, and I have a death ending disease.. I don’t have long to live and I’m only 53.
Cort, two studies I would like to know about. Remember the proteins in the spinal fluid comparing ME/CFS? They were supposed to follow up with turning it into a blood test. Schultz from New Jersey was the lead author. Also, Komaroff did an EEG of ME/CFS patients to depression folks where he could distinguish them. He was planning to do the study on a larger patient population.
Don’t know about that study. It’s probably ongoing but slated to end in 2015 or later Ditto with the Komaroff study. Or if either is getting private funding then I probably wouldn’t know about it.
There are probably lots of studies I don’t have info on. 🙂
All I can say is, “Wow!” There is a lot of interesting research going on! No matter how I feel physically, I remain hopeful that some answers may be found (what else is there but hope?) Thank you for this excellent gathering of information, Cort!
It’s amazing how much is going on even with this paltry NIH funding! I’m sure quite a few studies are not in there either. 🙂
Hi Cort,
Would you mind adding a link to the fundraising page for Invest in ME’s Rituximab trial?
It would be great if you could.
http://www.ukrituximabtrial.org/IIMEUKRT%20Donate.htm
Thanks, Bob.
Nothing on the Vagal Nerve theory?
Nothing definite. We do know that researchers are interested and VanElzakker has put together a group to do a study. He’s going to be at the IACFS/ME Conference and I’ll find out more there.
Thanks for the update! Do you know if there are any new happenings with the Vagus Nerve Infection Hypothesis or the trials of Ibudilast (AV411/MN166) for neuropathic pain in Australia?
http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/
Cort, maybe you should add the phase III Rituximab-study in Norway, which is due to start this year? http://mariasmetode.no/2013/11/update-haukeland-english/
It is fantastic to see this work done but will this lead to an objective breakthrough this year? I don’t think so. I am not so optimistic. It will all end with… nothing.
Exactly what I was going to say. I live in hope of the time when we will have our day, Things have defintely improved since 10 years ago, but what does it take to see any change on the ground? Does it have to be a unique biomarker to ME that gets replicated in large cohorts and published in major medical journals? Is that it, or do we need scientists to work on a diagnostic criteria with symptoms based on objective findings too? Unless there’s a clear idea and a plan, we’re just hoping something comes out of good but underfunded research, on a mixed cohort ,trying to convince the government and doctors that we’re ill with a specific disease. I want to see a breakthrough that will make a big difference to how ME is viewed and treated. I’m sure it will come, but it seems a bit like waiting for a miracle at the moment.
I tend to agree….
My main hunches are that CFS is either autoimmune, and if so we may have luck with rituximab (fingers crossed), or it is neuro-immune, which will take a fair bit of work.
In terms of the latter I’m trying some Chinese herb soon which acts on microglial activation let’s see how that goes.
Cort, can you elaborate on Klimas’s immunotherapy? She has talked up various immune therapies over the last 10-15 years and nothing has come of it.
Although I feel awful right now I look forward to every good day which I KNOW I will be getting. So, although there’s that little dark cloud that hangs around everything to do with CFS/ME I think the above trials, tests etc sound very exciting and, who, knows could even turn up something miraculous!
You are so right, Margaret. We know we are sick. We know there is something truly wrong with our bodies, so someone, somewhere will find what is going on with us eventually.
You really never know what finding could turn this disease around. If you get a result that sparks the research community things could start moving very quickly.
I think many in the research community would love to explain ME/CFS – they just need the right ‘in’ to embrace it. Who knows? Maybe that ‘in’ is in the above list?
Well said,Cort. and Thank you for this welcomed information.
Cort,
Wow, this is a heck of a comprehensive update. Thank you.
On another note, I have heard from a reliable source that you or Phoenix Rising, when you were there, got donations from CFIDS Assoc. of America. So let me ask you if you, or any entity you have been connected to has received anything of value from CAA, HSS, Lightning Process or related people or entities or any other person or entity that might create a conflict of interest, bias or the appearance of either. Sorry for the legalese, I just want to make sure we’re clear.
I hope to hear from you. Thanks for your help.
Sincerely,
Justin
You’re kind of amazing in your search for dirt, Justin. In general the names of the donors to Health Rising (and to Phoenix Rising before) are private unless the donor wishes to release the information.
However, I will tell that neither Phoenix Rising while I was there or Health Rising has received donations or other financial support from any of the entities you mentioned.
There was no need to justify the blogs I’ve done based on some sort of financial incentive. As hard as it is for you to get given your negative views of the CAA et al. my support of the CAA reflected then and now what I believe is a innovative research program (see antibody barcodes, Biovista, epigenetics above – my question would probably be why you’re not supporting those efforts.) The Lightning Process blog was done because it’s an important study and because I’ve come across people who benefited from it, one of whom I knew beforehand.
My support of the IOM project now reflects the fact that they’ve been quite receptive to advocates who actually attempted to contact them and they included enough ME/CFS experts on the panel that I’m not worried about the clinical definition anymore. Initially I was quite against the contract, I didn’t like the way it was done, but the important thing is the outcome and I believe the outcome will be positive.
I can’t imagine anyone at Phoenix Rising ever trampling on donors privacy and quite frankly only the Board would know who the donors are and I’m pretty darn sure you didn’t get that information from them. You might ask your ‘reliable source’ how in the world they would know the names of donors to Phoenix Rising.
Cort, you only answered half the question. The other part was if you have received money from any of the entity which would put you in a conflict of interest. I think it is a fair question to anyone who authors anything and a common expectation of researchers published in any journal. Full disclosure protects both the author and the people reading their work.
Respectfully, John
Like who John? If you’re that worried spell them out. Do you detect some sort of bias in the Health Rising blogs?
My answer is no. The only organizations I’ve received money from for Health Rising are the Sponsors listed on the website – Simmaron Research Foundation and Prohealth.
Thanks for the response, Cort.
I agree with John. This is why the Citizen’s United Supreme Court decision is so reviled, it allows corporate donors to remain anonymous.
COI and potential for bias exist all over the place and there usually isn’t anything shady about it. But it is very helpful and often required that these relationships be disclosed.
Do you mind answering the question (have you or related entities received anything of value that could create a conflict of interest or potential for bias) with respect to Phoenix Rising when you were there?
I appreciate your help.
Are you suggesting that the Department of Health and Human Services has some sort of slush fund they use to buy off bloggers? That, of course, would be a career ending revelation and for what. So that some members of a disorder that the DHHS has shunted off to the side and hardly pays attention to might be mollified by a blog?
The answer to the question is no.
It’s not like entities or anyone is vying for good coverage on Phoenix Rising. The biggest problem I faced at Phoenix Rising was not chasing away suspect donors (that never happened) but finding donors period. I would have loved some good corporate donors for PR :). Except for Prohealth I don’t think we had any. All individuals to my recollection.
I’m with you, Cort. Your answers have been more than adequate.
And I’d like to add a question back at Justin and John: in what way is it any of your business where the funding comes from, for this private blog?
Cort is doing the CFS/ME community a BIG favor with all the work he’s doing.
He is not a government entity, and not a publicly-traded corporation (which would owe answers to stockholders, but not to other private individuals.)
What’s wrong with you? Why are you asking him about his funding, anyway?
It must be wonderful to be that naive. I suggest you do a google search on astroturfing.
I’d note that Cort has said he received a “press” pass for the IACFS, which would seem to indicate some kind of “official” reporting function.
I don’t know the legalities about what he does or doesn’t have to do but I think his credibility is significantly enhanced by being as transparent as possible. Otherwise he is like me – just some random crank on the internet 🙂
You are just like Cort ??…
Then i must thank you for starting PhoenixRising and HealthRising. For tirelessly blogging and advocating on behalf of me/cfs patients. Giving them a voice and some hope.
Maybe you should get the press pass for the IACFS…and bring back the objective stuff? Your credibility would be significantly enhanced.
beaverfury
No, actually just like you: an anonymous crank on the internet.
My comment wasn’t a diss to Cort. It was a plea to be as transparent as possible, which really shouldn’t be controversial.
I forgot about the media pass. I’ve received a media pass to all the IACFS/ME conferences over the years. In 2007 Pandora paid for my airline ticket.
I understand the concerned, even if I do get a little tweaked by it, but the truth is it would be nice if this was a situation – whether to accept money from a corporation or other donor – that I had to worry about. 🙂
‘On another note’. Why did you bring up the subject of donations on this page Justin?
How does it relate to the article above ?
@beaverfury, @Cort
It doesn’t have anything to do with the article. I don’t have Cort’s email. It’s a topic that’s probably as well discussed openly anyway. I believe his answers and I feel better.
Cort’s views on the politics of ME (e.g. CAA, CDC) are at odds with the vast majority of patients expressing views on the internet including mine. I think they are misguided and harm our cause to get treated appropriately and have the abuse stop. Cort has a lot of influence and as such, I think transparency is best, normal and should be expected. I’m not going to apologize for that.
I have no idea what HHS or any ngo or people affiliated do with their money and if or to whom they give money. I heard a charge/rumor from a normally very reliable source and so I feel I had to address it. If this were about any other blog or organization, I would ask them too. And if I were a blogger or organization I would expect to be asked and answer the question.
Innocent conflicts and biases exist all the time. Also, more pernicious ones, as floydguy says- astroturfing is rampant. CAA is an astroturf org, for example and Cort agrees with a lot of their stances.
Cort creates and distributes a lot of news and info on treatment and studies and I think that is really great. I marvel at it actually. Even just this one blogpost alone is amazing.
Justin
Justin
You seem to be having trouble discerning between open Defamation and Libel, and open discussion.
If you had openly asked for Cort’s email i’m sure you could have discussed the matter in private, which would be more suitable.
This would be best too, for your ‘normally reliable source’. He/she may not want you to be ‘transparent’ about their identity over the net.
Healthrising is Cort’s blog. When people have blogs they can express whatever opinion they want.
Cort serves us but he is not our servant, and you don’t have to tune in.
Why not let him get on with the good work he does?
If you have different political views you could start your own blog.
Cort thanks for this great list. My only request would be for links to be included…
One other request – if it were possible – could we have a round up of the decent quality of evidence for each area being investigated? Doesnt have to be all just the latest and good research
eg
evidence for HPA axis activation
evidence for NK Cells
evidence for B Cells
etc…
Integrity is a beautiful character trait. Thanks for your tireless efforts, Cort. I don’t post much, but I read every word.
Wow! Yes Indeed this is a good year and l too like the- Everything Study- will have to take a little while to read it all and the comments but looks so promising. 🙂
Thankyou Cort for presenting these articles so clearly for us.
Cort, i believe in your integrity 100% ! Even if you write about LP which i believe is not helpfull for ME. But i respect every opion. Keep on the good ‘blogs’…..
Thanks Gijs for your willingness to hang with the blog even when it presents some material you may not agree with 🙂
The diversity of research is exciting. When the results are in, synthesizing it all into a coherent picture might be quite a monumental task. The mind boggles.
Also, one of the banes of current scientific and medical research is lack of replication. One study may purport to establish a relationship between x and y. If it is a large study from a prestigious research group or university, that result might be accepted as truth. But I read an article recently about the difficulty in replicating even some very widely believed and accepted studies. I wish I could remember where the article appeared but… eh, CFIDS brain fog… I can’t. I do recall that a big biotech firm undertook the task of replicating a number of scientific studies, and found they could reproduce results in far less than half of them.
Although I am amazed at the number of projects ongoing, listed above, most of which I had not heard of… I just wonder about the volume of results produced, how reliable and replicate-able they will be, and how they can ever be combined into a useful algorithm for solving the CFS problem. I’m a practical guy, and I guess I will be trying a lot of trial and error low cost low risk therapies until they claim to have figured this thing out.
All good points in my opinion. Nothing is valid or really makes a difference unless it is replicated and picked up on by other groups. With such a small research base that obviously doesn’t always happen and there’s the heterogeneity of the disease to worry about (will your CFS patients be similar to the original studies CFS patients?)….Maybe our best hope is to validate subsets….
I’m really excited, though, by the new researchers the Stanford group, the CFI and the CFIDS Association, in particular, have brought into ME/CFS.
About whether research can be reproduced.
Finally there are entities farther up the research “food chain” taking more note.
The Alzheimer’s research forum (alzforum.org) discusses this with regard to dementia-related issues:
http://alzforum.org/news/community-news/national-institutes-health-tackles-irreproducibility-problem
= = = = = = = = = =
The well-known science writer George Johnson discusses it on his blog called “Fire in the Mind.” His blog is in the magazine Discover:
The article, dated January 2014, is entitled, “Raw Data: How Widespread is the Problem of Irreproducible Results?”
He begins this way:
“Last week in the first installment of ‘Raw Data,’ my new monthly column for the New York Times, I reflected on what has become known in science as the problem of irreproducible results.
“The fear that the corpus of scientific knowledge is becoming polluted with questionable findings — experiments that cannot be replicated by other laboratories — has become so great that the journal Nature has promised to implement new measures “improving the consistency and quality of reporting in life-sciences articles” and has compiled an eye-opening archive called “Challenges in Reproducible Research.”
[ See his blog, for the interactive link to the archive at Nature. ]
= = = = = = = = = =
In December 2011, the Wall Street Journal had an article which began:
“Two years ago, a group of Boston researchers published a study describing how they had destroyed cancer tumors by targeting a protein called STK33. Scientists at biotechnology firm Amgen, Inc., pounced on the idea and assigned two dozen researchers to try to repeat the experiment with a goal of turning the findings into a drug.
“It proved to be a waste of time and money. After six months of intensive lab work, Amgen found it couldn’t replicate the results and scrapped the project.
” I was disappointed, but not surprised,’ says Glenn Begley, vice president of research at Amgen of Thousand Oaks, Calif. ‘More often than not, we are unable to reproduce findings published by researchers in journals.”
Thanks so much Cort, great work!
Just wondering at the lack of mention of the CAA funded gut study that has been bubbling away for several years now (apologies if it was mentioned and I missed it).
That’s a good question. I queried the CAA about what they were up to in the next year and they did not mention it (or I missed it.) I assume that its pending publication, though.
Thanks, Cort, for this summary of research going on in 2014! I appreciate your work for us so much.
I am very fortunate to have my dramatic improvement (not cure) from the use of Xifaxan for IBS and SIBO continuing. But at 66 and after 28 years of illness, I’m not expecting a cure in my lifetime. But then I didn’t expect Xifaxan to give me my life back either… I agree that we may be only one discovery away from a cascade of events that could change our lives!
Thanks Esther and congratulations. You never know we could be one discovery from something amazing as you were one drug away from getting much, much better health.
Thanks Cort… this was just what I was wanting to know.
Another study which should be finishing this year (as I got to told it was only a quick study and it started last year) so maybe we can start looking out for it’s publication towards end of the year, is a confirmation, follow up study done by the Sth Australian ME/CFS researchers…. who found the brain matter in the midbrain is strinking in those with ME/CFS (the longer we are sick, the more it shrunk.