It’s big, it’s got a budget of $30 billion and it just kicked a little more ME/CFS’s way…
Ian Lipkin gets a big grant. And so did some others. (Could the IOM and P2P reports have prompted this little flurry of interest?)
Check out all the active NIH chronic fatigue syndrome grants I could find. ME/CFS needs many, many more grants, but anyone looking at these grants will be struck, particularly in the larger ones, by the degree of complexity present. When the NIH grants it really grants.
While you’re checking these grants out envision this list being ten or more times longer. That’s what’s available when the NIH really funds a disease, and that, of course, is what disease that has the kind of impact ME/CFS does, deserves.
Note that seven of the grants have an exercise component..
New Grants
Ian Lipkin Finally Gets His Grant (or at least part of it):
The grant is not the whole shebang; however – or even close to it. It was is a one year grant that will allow them to collect samples. It does not provide any money to test the samples. In fact it does not, from my understanding, provide enough money to collect all the samples. An extra 250 K that has been provided by an anonymous donor and by the CII will allow them to collect all the samples.
After they have completed the sample collection they will apply for more funding. Lipkin’s goal is to examine bacterial, fungal and viral microflora in the throat, lower intestinal tract and blood several times over the year in patients from six ME/CFS clinics. It will also include a small exercise component.
INSTITUTE WATCH
NIAID – I
Do Your Immune Cells Have Post-Exertional Malaise?
Maureen Hanson has seemingly come out of nowhere to score several big ME/CFS grants, including earlier XMRV and gut grants. Prior to her work on ME/CFS her only NIH grant was for a long running RNA in Plants (yes – plants).
Hanson believes your immune cells may have PEM
First she scored a major XMRV grant and then a smaller R21 microbiome grant, and now another R21 project, still slated to last for three years.
She and another researcher – Campagne – will be looking at a fascinating question: do the mitochondrial problems believed present in ME/CFS extend to the immune cells? These Cornell researchers will be examining a host of energy related features (basal respiration rate, maximal respiration rate, ATP synthesis rate, spare respiratory capacity, basal glycolysis rate, maximal glycolysis rate, and glycolytic reserve) before and after stimulating B, T and NK cells. My guess is that the immunne cells will look OK prior to stimulation and become quickly depleted of energy – after stimulation: i.e. even our immune cells will have PEM.
That, of course, would fit with the natural killer and T-cell dysfunction seen, the significant immune exhaustion the Lipkin/Hornig CFI study found in longer duration patients, and, of course, with the aerobic exercise findings.
Her past history in plants aside, this Cornell researcher is definitely in the ME/CFS NIH pipeline now and doing well.
We’re not done with Hanson, though. She also working with Fabien Campagne (lead researcher) to use state of the art deep sequencing and bioinformatics to assess gene expression of three biggies in the immune system: the B, T and NK cells.
First they will characterize the mRNAs and microRNAs in the immune cells of ME/CFS and healthy controls. Then they will assess whether the differences they find shows up in the proteins. Since the proteins do the actual work of the cell, they are where the rubber meets the road in the body. If they can tie differences in gene expression to different levels of proteins in the body – they have the makings of a strong biomarker. If it all works out they’ll be creating some biological diagnostic algorithms; i.e. x plus y plus z in a blood test equals ME/CFS. That, of course, would be a big breakthrough
This project is slated to end in 2018. Things appear to be looking up for ME/CFS at the NIAID; both studies were funded by them.
Lubov Nathanson -another researcher I’ve never heard of – leads this intriguing exercise study at Dr. Klimas’ Nova Southeastern University Institute. This study will dig much deeper into immune cells called PBMC’s that were gathered in an earlier study at before, during and after exercise.
Nancy Klimas believes your genes may be getting sliced and diced during exercise
The group’s prior findings suggested that the genes in these patients PBMC’s were getting sliced and diced during exercise. They believed these broken up genes might be causing inflammation, immune problems, etc. They’ll be looking for these never before identified gene transcripts in hopes of finding a biomarker and establishing what the heck is going wrong during exercise, as well as assessing methylation levels.
This brand new study funded by National Institute of Neurological Disorders and Stroke (NINDS) will run through 2018
If I have it right, the hypothesis goes something like this. Epstein-Barr Virus – the biggest, literally – virus in the world is actually not doing so well in ME/CFS patients. Every time it tries to replicate it fails. It should ultimately build a nice capsule to house itself in but for some it never gets to that point. It’s basically broken but because it’s broken it keeps pumping out proteins that leak into our bodies.
Our immune systems – used to dealing with the antigens on the outer surface of the virus – goes bananas when it sees these unusual substances and produces the elements of sickness behavior such as fatigue, cognitive problems and anxiety. Furthermore during periods of stress – stress probably being the water many people with ME/CFS swim in anyway – EBV reactivates or tries to – and pumps out even more of these suspect proteins.
This is a big 5 year study that looks like it’s going to cost over $3 million and NIAID is going to foot the bill.
This is Younger’s much expanded followup study to his wildly successful earlier effort suggesting that leptin may be the key immune driver behind this disease. This was a grant, quite frankly, waiting to be funded. Not funding it would have been a travesty.
Younger will examine as many immune factors as he can in 70 ME/CFS women and 40 controls over 25 days. Each day the participants will note their symptom severity. He’ll attempt to develop an immune model that explains the fatigue occurring in ME/CFS, identify immune subsets and identify how immune factors work together over time to produce ME/CFS.
This big ROI grant is slated to last for four years and is being funded by the NIAID.
A New York researcher and the Simmaron Research Institute investigate whether EBV and autoimmunity are at the heart of things
We welcome a new ME/CFS researcher to the fold with this study. Roxana Moselhi of the State University of New York at Albany is collaborating with the Simmaron Research Foundation and Dr. Peterson to do genetic, immune (particularly EBV) and epidemiological (family medical history) work not just in ME/CFS patients but in their relatives and in healthy controls and their relatives. The study seeks to help determine if ME/CFS is an autoimmune disorder (featuring antibodies to Epstein-Barr Virus (EBV)) with an hereditary component. Non-Hodgkins lymphoma is a component of it.
Tying EBV to autoimmunity to lymphoma – now that would be an eye-opening result
This NAIAD funded R21 study runs through 2016
INSTITUTE WATCH
NIAID – VI
NINDS – I
The Men Get Their Due
Gender Differences in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Mary Fletcher will continue her big RO1 grant examining how men with ME/CFS differ in their response to exercise than women. She’s going to measure the response of their genes, immune cells and chemical responses to exercise. She will also examine the regulatory pathways concerned with “latent viral expression:” i.e. herpesivruses…They expect to find significant differences between men and women with ME/CFS that will ultimately result in different treatment approaches. You may remember that the team is focused on identifying biomarkers they can tweak up or down in time (i.e. – identify a string of treatments done consecutively) one treatment then another) to shift ME/CFS patients systems back to health.
The Klimas team’s focus on doing treatments in the right order was recently underscored by a groundbreaking study indicating that immune enhancing drugs can actually suppress the immune system if the immune system isn’t prepped for them first. This study – signed off by Vicky Whittemore of NINDS, demonstrates that NINDS is willing to take on immune studies.
INSTITUTE WATCH
NIAID – VI
NINDS – II
Dr. Klimas recently said, if I remember correctly, that she oversaw the grant applications for the last SEP. She had been on at least one SEP several years before – and reported then that she was disappointed by the lack of applications. This time, however, she said she was pleased at the applications that came in. (It’s not clear if she was on the panel that pushed forward Lipkin’s grant application.)
Baraniuk will be examining “exosomes” in ME/CFS. Exosomes are “multi-protein intracellular complex capable of degrading various types of RNA” (Does that clear everything up?). They are often associated with autoimmune diseases.
Baraniuk will be examining the miRNA and protein expression of these exosomes using PCR in the cerebral spinal fluid of ME/CFS patients. Baraniuks’s spinal fluid proteome expression study about ten years ago was successful but he asserts that this search will be able to identify more proteins plus 380 miRNA’s. (miRNA’s regulate gene expression.) By the end of this study he hopes to have identified significant sources of problems in the brain associated, he believes probably the microglia, astrocytes and other cells.
This is a continuing project slated to end next year that was signed off by Vicky Whittemore of NINDS.
James Baraniuk of Georgetown University earlier showed that the brains of GWS patients undergo significant changes when they exercise. Given the symptom similarity between GWS and ME/CFS, he proposes the same thing will happen to people with ME/CFS.
What will ME/CFS patients brains look like on exercise?
In this five year, NINDS funded study ending in 2018 Baraniuk hopes to be able to use the altered neural pathways he finds to uncover subsets in ME/CFS.
Ben Katz is going to do for college students what Andrew Lloyd did for people infected with pathogens in Dubbo, Australia; try to find out what’s causing people with an infection to come down with ME/CFS.
This impressive study seeks to enroll everyone on the Northwestern University campus into it, and then follow everyone who comes down with infectious mononucleosis – a known trigger of ME/CFS -for twelve months. They will examine biological (autonomic dysfunction, cytokines) and pyschological factors (coping skills, stressful life events) functioning. At the end they hope to determine risk factors for coming down with ME/CFS and biological factors that perpetuate it.
This expensive study ($700,000 this year) funded by NIAID (immune Institute) runs through 2018. NIAID funded it.
Lenny Jason’s population sampling study will determine the prevalence of pediatric ME/CFS, and the extent of orthostatic intolerance present. It will also examine the degree of “central” or brain based fatigue and cognitive impairment present by putting the kids on a tilt table and asking them to do a mental task. If the kids utter failure on the cognitive tests correlates reduced blood brain flows, then Lenny will have provided a biological reason for the cognitive problems found in kids with ME/CFS.
This study – already underway for several years – ends in 2016. The Office of the Director funded it.
INSTITUTE WATCH
NIAID – VII
NINDS – III
Office of the Director – I
Your Gene Expression On Exercise
Exploring host gene expression during post-exertional symptom flare in ME/CFS
Another new researcher – this time from Canada – enters the fold in this exercise study. David Patrick, who works at Canada’s version CDC , is apparently a big cheese in Canada. His exercise physiologist met with Staci Stevens and Chris Snell of the Workwell Institute regarding the two-day exercise tests. He reportedly entered a skeptic and came away a rather stunned believer.
Patrick says he will dig deeper into gene expression during exercise than has ever been done before
Now,Patrick aims to take the deepest look yet at what happens to the expression of our genes during exercise. He will use next generation sequencing to examine the expression of more genes (particularly immune genes) in more detail than has ever been done before.
Another NINDS funding study, this University of British Columbia project began in 2014 and will wrap up next year.
INSTITUTE WATCH
NIAID – VII
NINDS – V
Office of the Director – I
Probing the Exercise/Muscle/Fatigue/Pain Connection
Roland Staud – better known as a fibromyalgia researcher – continues a long-running five- year grant on the effects of exercise on muscle metabolites on fatigue and pain in ME/CFS. One paper published from this study suggested that metabolites produced by the muscles of ME/CFS patients (but not the muscles of the healthy control patients) were producing pain and fatigue in ME/CFS. Either the muscle metabolites are over activating sensory nerves or there are simply more of them. My understanding of the study suggests the first.
This study – funded by the National Institute of Nursing Research (NINR) ends in 2017.
The INSTITUTE WATCH
The race was between the immune and neurological Institutes with NIAID pulling out a win with seven currently funded studies to the NIND’s five.
Wow…this is all great news. Especially after the terrible news about funding getting cut. Although I know that there are a lot of similarities between ME/CFS and Fibro; I was wondering what if any new research is being done on Fibro? Thanks Cort for keeping us up-to-date.
If a study is registered with the NIH or any major umbrella organization, and all legitimate studies should be whether or not they are publicly or privately funded, then it will be posted on https://clinicaltrials.gov/ct2/home.
That link will take you to the Introductory page with useful links to explain many aspects of clinical trials. It also has a site search engine with links to good explanations of how to conduct basic and advanced searches.
If you are looking for studies relating to a particular disease then enter the name of the disease (in quotations if multi-worded) Chronic fatigue syndrome will result in 190 studies but if in quotation marks then you get 86 which narrows your results to studies with all of the words together in the study results.
Look for studies listed as recruiting. Check both these boxes at the top of the list. >Include only open studies >Exclude studies with Unknown status You will screen out all but 17 studies that are actively recruiting and 2 which are open but not yet recruiting. CFS may be linked with another disease in some studies and fibromyalgia is listed as the primary disease in a couple.
If you know the drug being tested or the Investigating Dr. adding those to the search keywords (separated by AND) then you are likely to find the trial you for which you are looking. For example Drug: Rituximab Contact: Olav Mella, MD, PhD 47 55972010 olav.mella@helse-bergen.no or Contact: Øystein Fluge, MD, PhD 47 55972010 oystein.fluge@helse-bergen.no
This trial happens to be in Norway. One must remember that the studies on the site, though not comprehensive, are worldwide. I wrote to the Dr and received a considerate reply but they can only recruit from the jurisdiction and patients covered by their national health insurance.
Once you do find a study in which you would like to participate, the contact information will be included in the trial’s information page along with inclusion and exclusion criteria. Please read this criteria information and if needed discuss it with your family or attending physician.
To answer a question about the need for guinea pigs, I know this doesn’t include the majority of people reading this, but Jarred Younger’s team at the Neuroinflammation, Pain, and Fatigue Laboratory at UAB is looking for volunteers with ME/CFS and GWI (and maybe fibro – I of course notice the CFS stuff) to volunteer for one or more of several studies. I hope to be in the second cohort on the leptin study (timing bad for the first round). BUT, you have to live w/in an hour of Birmingham, Alabama and be able to travel to his lab at the University of Alabama Birmingham (UAB). You have to go there daily for 25 days for the leptin study. That alone should trigger some good PEM for him, andI only live about 25 blocks from the lab.
Do you maybe know if the study that Dr. Lipkin and Dr. Hornig got the grant approved for is the same one they were raising money for with ME Chili Challenge?
If a study is registered with the NIH or any major umbrella organization, and all legitimate studies should be whether or not they are publicly or privately funded, then it will be posted on https://clinicaltrials.gov/ct2/home.
That link will take you to the Introductory page with useful links to explain many aspects of clinical trials. It also has a site search engine with links to good explanations of how to conduct basic and advanced searches.
If you are looking for studies relating to a particular disease then enter the name of the disease (in quotations if multi-worded) Chronic fatigue syndrome will result in 190 studies but if in quotation marks then you get 86 which narrows your results to studies with all of the words together in the study results.
Look for studies listed as recruiting. Check both these boxes at the top of the list. >Include only open studies >Exclude studies with Unknown status You will screen out all but 17 studies that are actively recruiting and 2 which are open but not yet recruiting. CFS may be linked with another disease in some studies and fibromyalgia is listed as the primary disease in a couple.
If you know the drug being tested or the Investigating Dr. adding those to the search keywords (separated by AND) then you are likely to find the trial you for which you are looking. For example Drug: Rituximab Contact: Olav Mella, MD, PhD 47 55972010 olav.mella@helse-bergen.no or Contact: Øystein Fluge, MD, PhD 47 55972010 oystein.fluge@helse-bergen.no
This trial happens to be in Norway. One must remember that the studies on the site, though not comprehensive, are worldwide. I wrote to the Dr and received a considerate reply but they can only recruit from the jurisdiction and patients covered by their national health insurance.
Once you do find a study in which you would like to participate, the contact information will be included in the trial’s information page along with inclusion and exclusion criteria. Please read this criteria information and if needed discuss it with your family or attending physician.
Do you know the total $’s of all? Thanx so much. I was having a sad day – as I just learned a friend who battled ME died of breast cancer. Then I read this and dare I hope again? 🙂
Yes, I had the same question as Alisa. It would be great to see a table showing all of the currently funded NIH ME/CFS studies, with the grants for each study each year shown for the forthcoming years. Is this something the NIH publishes/ could publish?
So, do you think the reason Dr Davis’ study wasn’t funded was, at least partly, because the NIH’s budget for ME research is fully committed?
No – Ron Davis took his grant to a different review panel than the ones these went through. All these grants were funded through the CFS review. He took his grant proposal to a very different place. I’m sure he had a good reason for that but he appears to have bumped into people who were not open to ME/CFS grant proposals.
Very interesting review, thanks.
Where did Ron Davis apply to, then?
Also, I’m assuming that all those grants don’t represent an increase in NIH funding beyond the usual and rather feeble $5m a year. Looked that way to me, but my ability to do cumulative mental arithmetic across numerous studies is feeble.
I’ve seen David Patrick’s name pop up every now and then, he seems to do very well controlled and interesting studies that always come back negative. I’ve wondered about his patient selection. If his group finds something you can probably bet it’s the real deal.
Wow, this is really exciting news to wake up to this morning! Thank you Cort for these glimmers of hope. Congratulations to all those who received funding!
Do you feel too incredibly ill to feel hope? I don’t have post exertional fatigue. I have 24/7/365 fatigue so intensely that I cannot exert, think, or even speak at times. May as well throw food at my mouth because I cannot get up to get food. So grateful my husband feeds me (#TearsFromPainAndFatigue #Unbelieved #InvalidatedByMDs
You must have 24 hour severe PEM I think Rosy… I am very encouraged that the CDC is taking on the severely ill in Phase II of their multi-site study….There is also Ron Davis’s severely ill study – they just got 500K to start that. They will be looking everywhere they can.. Please hang in there….you never know!!!
Thank you again, Cort. I so appreciate this research summary. And, my iPAD is now functioning correctly – no drop down banner in text area!
Rosy, I was like you, completely bed-ridden, unable to eat or walk to the bathroom, for over a year – after an injury to my neck and pelvis. I actually got well enough to lead a support group 13 years, and do volunteer work. Now at about 30% after decline. Do you want to talk?
I’m very pleased to see our local university (University of British Columbia or UBC) doing research on exercise and PEM. We already know what happens to us when we have PEM, it will be good to see up-to-date research on PEM. UBC was looking for 2 more participants, wish I could be involved but did a 2 day “back to work” assessment years ago. Nobody could figure out what was wrong with me. On the first day we started out walking around a long block-that nearly did me in then went on to other functional tests-most of which I had no strength to do then I collapsed on their rehab bed. We didn’t carry on with the rest of the afternoon testing or the next day. But nobody knew what was wrong-just that something was.
A big thanks, Cort, for encouraging news. I was wondering what I could get for my birthday after 40 yrs. of this disease that would make for a more upbeat day. This is a great help…I somewhat doubt that effective treatments or a cure will come in time for me, but just to have this illness acknowledged by all as a real and serious disease, and with biomarkers to prove it, would be awesome after all this time. Surely this is coming… Thanks, again.
I am so frustrated at the mythology that Fibromyalgia has treatments. The FDA approved 3 drugs that were supposed to deal with pain, not fibromyalgia, but pain. Those drugs were released despite the best performance of one being it worked for 21% of the people who tried it. That means not for 79%. It also had a high occurrence of side effects. Why was this almost worthless drug released? Because it made a lot of money. A whole bunch of Fibromyalgia patients and their doctors are going to try it once. That is a lot of money when you consider the numbers of us.
The other thing this fraud does is convince people that they have found a treatment for fibromyalgia. That, along with the assurance that fibromyalgia is not as serious a disease and that it improves with exercise has made me give up on any help at all. I wish anyone who wants to tell me that I have a ‘not as bad as ME’ disease would first come and spend a week with me.
Since people believe we have a treatment and not as ill the odds of our studies being funded is nil. I am grateful and joyful that ME patients can have the hope of some studies out there. I truly am. But please don’t get what you need by brushing off Fibromyalgia. Because it affects more people, it is going to have a higher number at every level of illness including pretty mild. It is also going to have a higher number of people stuck in their beds often unable to lift their heads. Don’t dismiss us and leave us in the darkened rooms with lights off and no stimulation. Some people assure me that if my illness is that bad, I must also have ME. No. My doctor will be happy to tell you that Fibromyalgia can produce all the symptoms — including retroactive malaise with trigger points that are knots that anyone can feel and see. I know it is too late for me, but don’t let it be too late for everybody please.
I agree with you Gillean. The big drug companies are trying to convince the general public that they have “treatments” for Fibromyalgia, when they have a couple drugs that help very few. It’s just a big push for everyone to get prescriptions and buy their drug! I for one am excited about all the attention ME\CFS is getting, there’s so many overlapping symptoms that the research has to be a help to fibromyalgia also!
The Dr.s don’t always have a firm diagnosis, there are not biomarkers for them to use yet …..some of these current trials should help with that problem.
Dr Braniuk is still accepting patients (and healthy controls) for both the exercise and cerebral spinal fluid studies @ Georgetown. I just completed both studies. I have serious ME/CFS, was treated very gently, they are an awesome team. Exercise was not at max but only at 70%!! I learned so much about myself, was very helpful. For info contact Amber 202-687-8231
Thanks very much for mentioning that! I did an exercise study with them and they were great! Very willing to talk and explain what’s going on (or what might be going on :))
Wow, another amazing post, Cort! I know how much hard work it is to pull all this information together. and you’ve done a great job of it again. I don;t know how you manage to keep up with it all!
I hope you don’t mind that I have once again piggy-backed on your hard work and linked to this post from my own blog – I borrowed your photo, too!
As a family we are affected. My daughter has moderate ME-CFS-Fibro and other accompanying conditions. Her father and I also have some of the components. We are in a family study and so thankful for the new research! Being in the trenches, I have developed some opinions. I wanted to throw them out there. Obviously, I think there is a genetic component- an inability of the immune system to overcome certain viruses. It’s the opposite of “What doesn’t kill me makes me stronger.” So, patients get weaker as they try to continue a normal life- not realizing what’s happening until they crash. It seems to affect all body systems as far as I can see. Any doctor that sees flu-like symptoms without improvement over an abnormal length of time needs to suspect ME-CFS and refer to a qualified specialist. This rarely seems to happen. Patients are left to fend for themselves- being blamed for an illness they don’t understand. Finally, a good doctor admitted he didn’t know and sent us to Stanford. That is the only kind of doctor I can respect. Years later, we have a wonderful specialist, but we had to find him ourselves. Another thought is about the cause of pain and PEM. I think that somehow the body isn’t getting what it needs to function. Nutrient energy isn’t being transferred properly. For example, healthy people can have leg cramps if they are short on calcium. ME-CFS patients can have pain with or without having exercised, but worse after overdoing exercise. I think their muscles aren’t getting the proper nutrients for operational energy and endurance- even with an excellent diet. So, why isn’t this energy being supplied? Is something blocking it? I suppose this could be auto-immune, gut-based or in the delivery system. Any way, we are thankful that research is moving ahead!
Sincerely,
Joanne Tatum
Hi there,
this is Katie from Germany.I’m suffering from ME as well but unfortunately there is no real studies on that disease in Germany at all. So do you know any contact I could adress to in US? would be so helpful for me, as I’m feeling worse every day.
thank you guys!
all the best for you
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Wow…this is all great news. Especially after the terrible news about funding getting cut. Although I know that there are a lot of similarities between ME/CFS and Fibro; I was wondering what if any new research is being done on Fibro? Thanks Cort for keeping us up-to-date.
Fibro is next!
Fibro already does have treatment at least. And seems accepted as an entity by mainstream medicine,
So great to see all this science happening. So thankful for the researchers and the money!! Do they need guinea pigs?? How would we find out?
If a study is registered with the NIH or any major umbrella organization, and all legitimate studies should be whether or not they are publicly or privately funded, then it will be posted on https://clinicaltrials.gov/ct2/home.
That link will take you to the Introductory page with useful links to explain many aspects of clinical trials. It also has a site search engine with links to good explanations of how to conduct basic and advanced searches.
If you are looking for studies relating to a particular disease then enter the name of the disease (in quotations if multi-worded) Chronic fatigue syndrome will result in 190 studies but if in quotation marks then you get 86 which narrows your results to studies with all of the words together in the study results.
Look for studies listed as recruiting. Check both these boxes at the top of the list. >Include only open studies >Exclude studies with Unknown status You will screen out all but 17 studies that are actively recruiting and 2 which are open but not yet recruiting. CFS may be linked with another disease in some studies and fibromyalgia is listed as the primary disease in a couple.
If you know the drug being tested or the Investigating Dr. adding those to the search keywords (separated by AND) then you are likely to find the trial you for which you are looking. For example Drug: Rituximab Contact: Olav Mella, MD, PhD 47 55972010 olav.mella@helse-bergen.no or Contact: Øystein Fluge, MD, PhD 47 55972010 oystein.fluge@helse-bergen.no
This trial happens to be in Norway. One must remember that the studies on the site, though not comprehensive, are worldwide. I wrote to the Dr and received a considerate reply but they can only recruit from the jurisdiction and patients covered by their national health insurance.
Once you do find a study in which you would like to participate, the contact information will be included in the trial’s information page along with inclusion and exclusion criteria. Please read this criteria information and if needed discuss it with your family or attending physician.
Best of luck to all,
William
To answer a question about the need for guinea pigs, I know this doesn’t include the majority of people reading this, but Jarred Younger’s team at the Neuroinflammation, Pain, and Fatigue Laboratory at UAB is looking for volunteers with ME/CFS and GWI (and maybe fibro – I of course notice the CFS stuff) to volunteer for one or more of several studies. I hope to be in the second cohort on the leptin study (timing bad for the first round). BUT, you have to live w/in an hour of Birmingham, Alabama and be able to travel to his lab at the University of Alabama Birmingham (UAB). You have to go there daily for 25 days for the leptin study. That alone should trigger some good PEM for him, andI only live about 25 blocks from the lab.
Do you maybe know if the study that Dr. Lipkin and Dr. Hornig got the grant approved for is the same one they were raising money for with ME Chili Challenge?
I don’t know. They have two gut projects going on; I’m not sure which one the Chili Challenge funds went to.
All good news.
exciting research !
thanks Cort for your excellent reporting.
this article has made me feel hopeful again 🙂
If a study is registered with the NIH or any major umbrella organization, and all legitimate studies should be whether or not they are publicly or privately funded, then it will be posted on https://clinicaltrials.gov/ct2/home.
That link will take you to the Introductory page with useful links to explain many aspects of clinical trials. It also has a site search engine with links to good explanations of how to conduct basic and advanced searches.
If you are looking for studies relating to a particular disease then enter the name of the disease (in quotations if multi-worded) Chronic fatigue syndrome will result in 190 studies but if in quotation marks then you get 86 which narrows your results to studies with all of the words together in the study results.
Look for studies listed as recruiting. Check both these boxes at the top of the list. >Include only open studies >Exclude studies with Unknown status You will screen out all but 17 studies that are actively recruiting and 2 which are open but not yet recruiting. CFS may be linked with another disease in some studies and fibromyalgia is listed as the primary disease in a couple.
If you know the drug being tested or the Investigating Dr. adding those to the search keywords (separated by AND) then you are likely to find the trial you for which you are looking. For example Drug: Rituximab Contact: Olav Mella, MD, PhD 47 55972010 olav.mella@helse-bergen.no or Contact: Øystein Fluge, MD, PhD 47 55972010 oystein.fluge@helse-bergen.no
This trial happens to be in Norway. One must remember that the studies on the site, though not comprehensive, are worldwide. I wrote to the Dr and received a considerate reply but they can only recruit from the jurisdiction and patients covered by their national health insurance.
Once you do find a study in which you would like to participate, the contact information will be included in the trial’s information page along with inclusion and exclusion criteria. Please read this criteria information and if needed discuss it with your family or attending physician.
Best of luck to all,
William
Thanks Cort for this information. It is nice to read good news as far as research funding for a change.
Cort,
Do you know the total $’s of all? Thanx so much. I was having a sad day – as I just learned a friend who battled ME died of breast cancer. Then I read this and dare I hope again? 🙂
Yes, I had the same question as Alisa. It would be great to see a table showing all of the currently funded NIH ME/CFS studies, with the grants for each study each year shown for the forthcoming years. Is this something the NIH publishes/ could publish?
So, do you think the reason Dr Davis’ study wasn’t funded was, at least partly, because the NIH’s budget for ME research is fully committed?
No – Ron Davis took his grant to a different review panel than the ones these went through. All these grants were funded through the CFS review. He took his grant proposal to a very different place. I’m sure he had a good reason for that but he appears to have bumped into people who were not open to ME/CFS grant proposals.
Very interesting review, thanks.
Where did Ron Davis apply to, then?
Also, I’m assuming that all those grants don’t represent an increase in NIH funding beyond the usual and rather feeble $5m a year. Looked that way to me, but my ability to do cumulative mental arithmetic across numerous studies is feeble.
It was a NINDS unit – don’t know which one..It required an application to make an application. Very different from the usual SEP practice.
Maybe a bit of a tick up in funding but essentially the same 🙂
I’ve seen David Patrick’s name pop up every now and then, he seems to do very well controlled and interesting studies that always come back negative. I’ve wondered about his patient selection. If his group finds something you can probably bet it’s the real deal.
This is fascinating, Cort.
Makes the UK situation look like the Dark Ages.
Good news, but they missed a very big important one a PETscan study! This could lead to a real breakthrough at short notice.
Wow, this is really exciting news to wake up to this morning! Thank you Cort for these glimmers of hope. Congratulations to all those who received funding!
This is all great news. Now, how is it gotten into the news and kept in the news.
The squeaky wheel get the grease!
Do you feel too incredibly ill to feel hope? I don’t have post exertional fatigue. I have 24/7/365 fatigue so intensely that I cannot exert, think, or even speak at times. May as well throw food at my mouth because I cannot get up to get food. So grateful my husband feeds me (#TearsFromPainAndFatigue #Unbelieved #InvalidatedByMDs
You must have 24 hour severe PEM I think Rosy… I am very encouraged that the CDC is taking on the severely ill in Phase II of their multi-site study….There is also Ron Davis’s severely ill study – they just got 500K to start that. They will be looking everywhere they can.. Please hang in there….you never know!!!
Thank you again, Cort. I so appreciate this research summary. And, my iPAD is now functioning correctly – no drop down banner in text area!
Rosy, I was like you, completely bed-ridden, unable to eat or walk to the bathroom, for over a year – after an injury to my neck and pelvis. I actually got well enough to lead a support group 13 years, and do volunteer work. Now at about 30% after decline. Do you want to talk?
I’m very pleased to see our local university (University of British Columbia or UBC) doing research on exercise and PEM. We already know what happens to us when we have PEM, it will be good to see up-to-date research on PEM. UBC was looking for 2 more participants, wish I could be involved but did a 2 day “back to work” assessment years ago. Nobody could figure out what was wrong with me. On the first day we started out walking around a long block-that nearly did me in then went on to other functional tests-most of which I had no strength to do then I collapsed on their rehab bed. We didn’t carry on with the rest of the afternoon testing or the next day. But nobody knew what was wrong-just that something was.
A big thanks, Cort, for encouraging news. I was wondering what I could get for my birthday after 40 yrs. of this disease that would make for a more upbeat day. This is a great help…I somewhat doubt that effective treatments or a cure will come in time for me, but just to have this illness acknowledged by all as a real and serious disease, and with biomarkers to prove it, would be awesome after all this time. Surely this is coming… Thanks, again.
Forty years – a long time!
I think things are going in the right direction – stay tuned…
How can we get involved in these studies?
Lipkin is taking them from patients seeing ME/CFS experts such as Dr. Peterson, Dr. Bateman, Dr. Klimas and Dr. Levine
I am so frustrated at the mythology that Fibromyalgia has treatments. The FDA approved 3 drugs that were supposed to deal with pain, not fibromyalgia, but pain. Those drugs were released despite the best performance of one being it worked for 21% of the people who tried it. That means not for 79%. It also had a high occurrence of side effects. Why was this almost worthless drug released? Because it made a lot of money. A whole bunch of Fibromyalgia patients and their doctors are going to try it once. That is a lot of money when you consider the numbers of us.
The other thing this fraud does is convince people that they have found a treatment for fibromyalgia. That, along with the assurance that fibromyalgia is not as serious a disease and that it improves with exercise has made me give up on any help at all. I wish anyone who wants to tell me that I have a ‘not as bad as ME’ disease would first come and spend a week with me.
Since people believe we have a treatment and not as ill the odds of our studies being funded is nil. I am grateful and joyful that ME patients can have the hope of some studies out there. I truly am. But please don’t get what you need by brushing off Fibromyalgia. Because it affects more people, it is going to have a higher number at every level of illness including pretty mild. It is also going to have a higher number of people stuck in their beds often unable to lift their heads. Don’t dismiss us and leave us in the darkened rooms with lights off and no stimulation. Some people assure me that if my illness is that bad, I must also have ME. No. My doctor will be happy to tell you that Fibromyalgia can produce all the symptoms — including retroactive malaise with trigger points that are knots that anyone can feel and see. I know it is too late for me, but don’t let it be too late for everybody please.
I agree with you Gillean. The big drug companies are trying to convince the general public that they have “treatments” for Fibromyalgia, when they have a couple drugs that help very few. It’s just a big push for everyone to get prescriptions and buy their drug! I for one am excited about all the attention ME\CFS is getting, there’s so many overlapping symptoms that the research has to be a help to fibromyalgia also!
The Dr.s don’t always have a firm diagnosis, there are not biomarkers for them to use yet …..some of these current trials should help with that problem.
Dr Braniuk is still accepting patients (and healthy controls) for both the exercise and cerebral spinal fluid studies @ Georgetown. I just completed both studies. I have serious ME/CFS, was treated very gently, they are an awesome team. Exercise was not at max but only at 70%!! I learned so much about myself, was very helpful. For info contact Amber 202-687-8231
Thanks very much for mentioning that! I did an exercise study with them and they were great! Very willing to talk and explain what’s going on (or what might be going on :))
Wow, another amazing post, Cort! I know how much hard work it is to pull all this information together. and you’ve done a great job of it again. I don;t know how you manage to keep up with it all!
I hope you don’t mind that I have once again piggy-backed on your hard work and linked to this post from my own blog – I borrowed your photo, too!
http://livewithcfs.blogspot.com/2015/10/2015-nih-grants-for-mecfs.html
Thank you so much for pulling this together – this range and depth of new research gives me a lot of hope for the future!
Sue
Live with ME/CFS
🙂
Thank you
As a family we are affected. My daughter has moderate ME-CFS-Fibro and other accompanying conditions. Her father and I also have some of the components. We are in a family study and so thankful for the new research! Being in the trenches, I have developed some opinions. I wanted to throw them out there. Obviously, I think there is a genetic component- an inability of the immune system to overcome certain viruses. It’s the opposite of “What doesn’t kill me makes me stronger.” So, patients get weaker as they try to continue a normal life- not realizing what’s happening until they crash. It seems to affect all body systems as far as I can see. Any doctor that sees flu-like symptoms without improvement over an abnormal length of time needs to suspect ME-CFS and refer to a qualified specialist. This rarely seems to happen. Patients are left to fend for themselves- being blamed for an illness they don’t understand. Finally, a good doctor admitted he didn’t know and sent us to Stanford. That is the only kind of doctor I can respect. Years later, we have a wonderful specialist, but we had to find him ourselves. Another thought is about the cause of pain and PEM. I think that somehow the body isn’t getting what it needs to function. Nutrient energy isn’t being transferred properly. For example, healthy people can have leg cramps if they are short on calcium. ME-CFS patients can have pain with or without having exercised, but worse after overdoing exercise. I think their muscles aren’t getting the proper nutrients for operational energy and endurance- even with an excellent diet. So, why isn’t this energy being supplied? Is something blocking it? I suppose this could be auto-immune, gut-based or in the delivery system. Any way, we are thankful that research is moving ahead!
Sincerely,
Joanne Tatum
Hi there,
this is Katie from Germany.I’m suffering from ME as well but unfortunately there is no real studies on that disease in Germany at all. So do you know any contact I could adress to in US? would be so helpful for me, as I’m feeling worse every day.
thank you guys!
all the best for you