A look back at a most interesting year which has to start with Cortene…
It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat ME/CFS – then, after years of grinding effort, move onto a brand new drug for the disease. Cortene turned that timetable upside with its introduction of a brand new drug for ME/CFS.
Only time will tell how the CT38 drug trial will turn out, but having a small drug company target a new drug at this disease, successfully and privately raise the money needed to do the trial, get FDA approval for the trial, and actually begin it at the Bateman Horne Center has been sweet to see.
The fact that their hypothesis suggests that if everything goes right they might be able to cure ME/CFS is like icing on the cake. Whatever happens it’s been great to have Cortene in the picture over the past year.
Boldest Attempts to Treat, No… Cure ME/CFS
Both Cortene and Nancy Klimas hold out the possibility of actually curing ME/CFS by resetting systems than have gone off the rails in ME/CFS. (If Robert Phair and his Metabolic Hypothesis work out, he may be the next to propose a system reset in this disease.)
Best Possible Tweak to an Existing Drug
Jarred Younger (who else) takes on a different form of naltrexone – a potentially much more powerful form of LDN – that may be more effective at tamping down the neuroinflammation in chronic fatigue syndrome (ME/CFS) and fibromyalgia.
The Most, In Retrospect, Obvious “We should have known it wasn’t going to be this simple”, Moment
Ecosystems are complex. They tend to exhibit waves of succession in which one species paves the way for another. Put the wrong species in at the wrong time and it can do bad things. Why we thought that throwing a couple of probiotics into a trillion-member gut ecosystem was going to always work is altogether unclear. (Wishful thinking?)
It’s not that probiotics can’t help. Their value has been proven in some gut conditions, but a recent small study found that they probably wash through the guts of a significant subset of people and, when combined with antibiotics, can actually impede the regrowth of a healthy gut flora.
Most Compassionate Stance
Dr. Bateman just could not go to the pay-for-service model that pervades the medical profession. The Bateman Horne Center takes insurance and does not turn people away based on their ability to pay…
Cleverest Way to Care for People with FM and ME/CFS
Theresa Dowell, RN (and ME/CFS and FM patient) hangs up her shingle in Flagstaff, Arizona and begins treating people with FM and ME/CFS in much the same way that doctors do…
Most Intriguing New Diagnostic Possibility
Caroline Christian reports on the possibility that any one of us may have a cerebral spinal fluid leak. Check out a follow-up report from the Dysautonomia Conference.
Best Way to Overturn Traditional Paradigms (and Show Autoimmunity)
When you don’t fit the norms – and people with these diseases definitely don’t fit the norms – you have to create new ones. POTS patients, who consistently tested negative on traditional tests of autoimmunity, consistently tested positive for newer antibody tests for Sjogren’s Syndrome and antiphospholipid antibodies – suggesting we need some new norms.
Best Breakthrough in Another Disease That Could Benefit ME/CFS and FM
An explosion of apparently much more effective migraine drugs are expected to appear over the next year or two. That’s good news for the many migraine sufferers with ME/CFS and FM (It’s more than enough to have either), but given the interesting similarities between the three diseases, one wonders if the drugs might do more than help migraine (?).
Plus, we know that Dr. Pridgen’s protocol works in some people with ME/CFS/FM – we just don’t know how many. A case report suggests, though, that the help might not stop there – his protocol cleared up migraine in one patient as well.
Most Needed Orthostatic Intolerance How To
Dr. Peter Rowe and Dutch researchers show that a short 2-minute tilt table test will not, repeat, will not pick up many cases of POTS.
Best Way to Strike at the Heart of the Graded Exercise Therapy (GET) Paradigm
With science, of course! GET presupposes that since people with ME/CFS are simply deconditioned people in healthy bodies, all they need to do is get out and exercise. Visser’s large Dutch study destroyed that idea in one fell swoop when it showed one’s level of “deconditioning” is a function of one’s functionality. Whether low or high functioning, deconditioned or not, everyone with ME/CFS has similar problems exercising – i.e., deconditioning is brought on by ME/CFS, not the other way around.
Most Intriguing Hunt for New ME/CFS Treatments
The Solve ME/CFS Initiative funds Vince Lombardi of the Whittemore-Peterson Institute to take a deep dive into their immune activation profiles. Lombardi hopes to identify subsets of ME/CFS patients that could benefit from immune drugs that are currently in use. Not only could Lombardi and the SMCI, if they are successful, open new treatment possibilities, but they could, by finding immune issues present in other diseases, help to validate the biological nature of the disease.
Cleverest Way To Get Doctors Engaged – Get Them to See A Movie!
Unrest has more than fulfilled its potential and ME Action has been quite creative in its efforts to get the film in front of as many people as possible, but this one takes the cake. ME Action found a way to give doctors educational credits for watching Unrest. That’s right, doctors can now get educational credits for watching a film that lays out ME/CFS in its starkest reality…
Best Chance for Better Pain Drugs – Quickly
There’s nothing like making something an issue during a Presidential campaign to get the NIH moving. The 2011 IOM Report on Pain In America shocked the medical world with its estimate that 635 billion dollars are spent on pain every year. The NIH, unresponsive as always to silly things like pain, blinked twice and mostly kept to its ways.
Then the opioid crisis hit – and became a Presidential campaign issue. This time, the NIH launched the HEAL (Helping to End Addiction Long-term) Initiative, which will, besides addressing new ways to tackle opioid addiction, pump a basketful of money into producing 15 new pain drugs over the next five years.
Most Astonishing Recovery Story
After 26 years of hell, Ken Anbender completely recovers from ME/CFS/FM using Dr. Pridgen’s protocol.
Most Stubborn, Reputation-Defying, Unfathomable and Just Weird Position
Despite the mounting evidence, the blistering data reassessment, the protest from scads of academics, the Journal that dedicated itself to the PACE trial problems, the withdrawal of the Cochrane GET overview, etc., The Lancet editor Richard Horton continues to defy logic by standing behind his journal’s publication of the PACE trial.
Horton must have done something very right at The Lancet to avoid being yanked over taking such an unscientific stance. One wonders how long it can continue though.
Best Free Willy Project
The Bateman Horne Center’s “Free Cindy” project to get enough grants, funding and doctor support so that our foremost ME/CFS/FM doctor and educator, Cindy Bateman, can teach as many practitioners as possible how to manage and treat ME/CFS and FM.
Most Heartfelt Thank You’s
After decades of caring for ME/CFS/FM patients, Dr. Chuck Lapp hangs up his shingle, sparking a torrent of thank you’s from the ME/CFS/FM community.
Best Way to Help Patients Now!
AMMES Financial Crisis Fund helps those most in need in the ME/CFS community.
Best New Template for an ME/CFS/FM Center of Excellence That One Hopes Succeeds
By turning non-profit, applying for grant (after grant after grant) and fundraising, the Bateman Horne Center hopes to provide a template for an ME/CFS/FM center that can successfully do it all: serve all its patients, attract good doctors, do good research and educate the masses (of physicians…).
Best New Attempts to Have Doctors Get It About ME/CFS/FM
BHC begins the ECHO project, Workwell begins the Continuing Education Project.
Plus, Workwell will be producing a continuing education program on ME/CFS in partnership with MedBridge, which will be aimed at health care providers, including physical and occupational therapists, nurses and athletic trainers, and is expected to launch in 2019. Their hope is to educate health care providers and provide resources for patients.
Most Long-Delayed Research Bloom
New Zealand researcher Les Simpson was the first, way back in 1989, to find strange-looking red blood cells in ME/CFS. That planted a seed which lay dormant for 15 years, started to sprout a bit in the mid-2000’s, and then went back into hibernation for almost fifteen years when it suddenly put out a nice big bloom with an OMF-funded red blood cell study in 2017. That study, which found lots of weird red blood cell shapes and evidence of slow transit times through the capillaries, could explain some of the energy issues in ME/CFS.
Thanks to the OMF (and your donations), and San Jose State University, and Stanford researchers led by Ron Davis, the third time is the charm. We won’t have to do the ten-year thing again! One of the great things about private research foundations is their ability to turn on a dime. The next study – the one to really watch for from Ron Davis, which will incorporate new technologies – has already started. Now that’s progress!
Most Spine-Tingling Hypothesis!
Three – count them – three papers from Belgium published in December explore the idea that increased cerebral spinal fluid pressure (otherwise known as “chronic postural idiopathic cerebrospinal hypertension”!) is compressing the nerve roots and causing all manner of symptoms in fibromyalgia and chronic fatigue syndrome (ME/CFS). Another blog on this fascinating idea is coming up.
The Winner of the “It’s About Time!” Award
After several tries, Ron Davis finally got his big NIH grant! Ron Davis has had his troubles with the NIH but when the NIH comes through, they really come through. The multi-million dollar 2018 NIH grant will enable him and Mark Davis (Stanford immunologist extraordinaire) to hopefully determine what is putting the T-cells in ME/CFS patients into overdrive…and who knows, perhaps figure out what is causing ME/CFS itself.
Best Place to Plunk a $1,000,000 or so Dollars – the ME/CFS Collaborative Research Center at Harvard
What better place for a research center than the top (sorry Stanford, but yes) medical school in the country – Harvard. Remarkably, the Open Medicine Foundation is now supporting research centers at two (Stanford, Harvard) of the top three medical schools in the country. (They pick their institutions well!) Led by Ron Tompkins, the leader of the “Glue Grants” – one of the biggest NIH grants ever – the center will focus on a much needed topic – the muscles in ME/CFS.
Newest, Most Exciting ME/CFS Research Hub
How did this happen? Boston has become a new hub of ME/CFS/FM research. Ron Tompkins, Wenzhong Xiao, David Systrom, Anne Oaklander, Mark Van Elzakker, Tony Komaroff and Janet Mullington are all working on ME/CFS and FM in the Boston area.
Best Effort Aimed at Ensuring One’s Life Was Not Spent in Vain
Deaths from ME/CFS tend to be horrid but need not be in vain if they can help others. Dr. Montoya has begun accepting autopsies and ME Action provides a way for UK residents to submit autopsies. Find out more
Best Year for an ME/CFS Researcher
Jarred Younger continues to surprise, provide hope and demonstrate that one can build a career researching ME/CFS and FM. 2018 was Younger’s year – his novel brain heat-mapping technique found widespread inflammation in ME/CFS patients’ brains, he’s determining if immune cells are invading ME/CFS patients’ brains, he’s beginning a study on neuroinflammation in fibromyalgia, his big Good-Day/Bad Day study grant was renewed, he applied for another NIH grant to continue his brain-mapping work, he’s working on a new, possibly better form of low dose naltrexone, and he finished up his botanicals study.
In short, he’s an indication of what’s possible for a creative and committed researcher in these fields.
Hottest Fibromyalgia Finding
Everyone thought that with all the central sensitization going on that something must be lighting the pain and other sensory neurons in FM patients’ brains and spinal cords on fire. It is. They were right. A study last year indicated that not only is neuroinflammation alive and well in FM patients’ brains, but it’s widespread as well – just as it is in ME/CFS.
Most on-the-Face-of-It Unsettling (but Potentially Excellent) Research Project
Evoking images of BrainDead, a TV series where aliens are invading people’s brains, MERUK funded a Jarred Younger study to determine if immune cells have invaded the brains of people with ME/CFS. There’s something about invasions of the brain that spark unease…
Most Mysterious “Finding Waldo” Project
Australian metabolomics expert Chris Armstrong is looking for Waldo – a factor he believes could get at the root of what is happening in ME/CFS. We can’t say what Waldo is – that would be giving it away, but if Chris can find Waldo, and he’s looking hard, we may be really onto something. We should know this year.
Armstrong’s compatriot, memorius researcher and longtime leader in the metabolomics field, Neil McGregor, thinks he has the answer as well! A blog on that is coming up 🙂 . Speaking of Aussie news…
Most Anticipated Wait
in March 2016, Griffiths’ team in Australia stated that not only had a biomarker been found but that it was looking to partner with diagnostic companies to bring it to market. They expected the new screening test to become “an industry standard” within 5 years. Over the past four years, the group has successfully raised $8 million in funding, leaving it one of the best funded ME/CFS research groups. A screening test would definitely make it all worthwhile.
Best Opportunity to Get Involved in Precision Medicine
The NIH’s All of Us seeks to get extensive genetic information on 1,000,000 Americans. It wants to get so much information, in fact, that it will require developing new ways to sequence genetic data.
Best Hypothesis Brought Back to Life
Years ago Dr. David Bell proposed it, but only recently has the idea that ME/CFS is an atypical form of sepsis received any attention. It’s receiving attention from some good quarters, though, with Ron Davis and Chris Armstrong suggesting it may be so, and Ron Tompkins – sepsis researcher extraordinaire – is now in on the hunt for the cause of ME/CFS.
Best Name for an ME/CFS Hypothesis
Robert Phair’s “Metabolic Trap” hypothesis hits a chord with its inclusion of metabolism and that trapped feeling…
Nicest Confluence of Hypotheses
Is it something in the air over there? Two exciting new hypotheses emerged from different groups working within ten miles of each other in the San Francisco Bay Area. The groups started out in entirely different places (Cortene – CRF2 receptors in brain; Metabolic Trap – tryptophan metabolism in the cells), yet somehow ended up in same area of the brain – serotonergic pathways. They even used the same image to illustrate their hypotheses.
Most Hopeful Collaborative Effort
It’s seemed like the OMF sponsors their Working Group meeting and the SMCI, with their (less public) researcher meeting, sponsors theirs – and never the twain have met.
That changed when SMCI-funded Ramsay Award winner Dawei Li, PhD included Stanford and Harvard researchers associated with OMF (Ron Davis and Wengzhong Xiao), as well as University of Utah, and Canadian researchers in his study of endogeneous retroviruses and ME/CFS. There’s apparently nothing like a retrovirus to bring researchers together…
Most Shocking Turnaround
Whaaattttt? From the heart of CBT/GET land, the Netherlands Research Council calls ME/CFS a serious disease and recommends that future research focus on the pathogenesis of ME/CFS – not programs like CBT/GET…
Best Open Source Move
Ron Davis opens the severely ill ME/CFS project data to researchers – and quietly gets 1000’s of views.
Biggest Indirect Win for ME/CFS
If Nancy Klimas’s massive ($8.5 million) Gulf War Illness Consortium grant has anything like the effect her last GWI Consortium grant had, it should provide some juicy insights into ME/CFS as well.
Klimas, who is already testing the same drug combo in ME/CFS as she is in GWI, will be undertaking no less than five clinical trials in the next four years.
Best Indication that an ME/CFS researcher is paving new ground – not just in ME/CFS – but in medicine.
When I asked Gordon Broderick if anyone was doing the kind of modeling work he was doing with Nancy Klimas, he said no. That’s actually a little scary…
After the Parkinson’s Foundation failed in their attempt to lure Nancy Klimas’s entire bioinformatic modeling effort to their field, they gave her a boatload to money to train their team to do it, and then funded her clinical trial in ME/CFS. That’s pretty exciting.
Most Expected Cognitive Finding in Fibromyalgia
I had completely forgotten about this study but to no one’s surprise, that a study found that attention deficit hyperactivity disorder (ADHD) runs rampant in fibromyalgia.
Most Space-Agey New Research Effort – The “ME/CFS in a Petri Dish” Effort – Plus Nicest Picture!
At the end of last year, the SMCI funded a stem cell researcher, Dr. Malav Trivedi, to use reprogrammed neurons to understand ME/CFS better.
Those two end-of-the-year research grants from the SMCI had an added bonus – two younger researchers are now working in this field.
Funding and Advocacy
Most Generous Benefactor
Just before it disappeared into the ether forever, the bitcoin-derived Pineapple fund juiced the Open Medicine Foundation with a $1 million donation and then sweetened the pot a month later with another $4 million, setting the stage for an astonishing $9 million 2018 fundraising effort by the OMF. Then the Pineapple Fund turned around and gave ME Action $50K.
Whoever Pineapple is (he/she remained anonymous to the end), let’s wish them good luck in their future endeavors (and hope they are as bountiful 🙂 .
Most Astonishing Increase in Activity
ME Action apparently wasted no time in putting that donation to work and has been blasting out ME/CFS news and supporting advocacy efforts at an amazing rate.
Promise Most Poorly Kept
“Give us a chance to prove we’re serious, because we are.” Francis Collins in 2015
“The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition.” Francis Collins, Walter Koroshetz
Four years ago, Francis Collins bared his soul, admitted the NIH had neglected ME/CFS, and promised this time it would be different – the NIH was finally going to get serious about ME/CFS. Four years later, it’s clear he wasn’t serious at all. After momentarily rising to the occasion, he and the NIH dropped the ball and moved on. Once the spotlight was off things returned to their normal, you-know-what, baseline.
Yes, we have three NIH-funded research centers we didn’t have before, and one slow but very comprehensive intramural study underway, but Dr. Collins promised that the NIH was actually going to get serious about this disease. What they didn’t isn’t serious. It certainly isn’t serious for any normal disease, and it isn’t even serious for ME/CFS.
Thirteen years ago, the NIH provided the smallest RFA possible for ME/CFS. Eleven years later, adjusted for inflation, it provided almost exactly the same amount.
Put another way, thirteen years ago we had Vivian Pinn and the little Office for Research into Women’s Health (ORWH) pulling for us. Three years ago, we had the directors of the NIH and NINDS, the IOM report and a supposedly reinvigorated Working Group to provide some wind for our sails, and we got essentially the same financial commitment as before.
Four years after Dr. Collins’s promise, fewer researchers are applying for NIH grants than ever before.
One wonders if Collins remembers that he ever made a promise? Or was it just more NIH-speak – “heartfelt” words from NIH personnel about how much they cared, about how serious a disease this was… blah, blah, blah, blah. Words which ended up meaning nothing but did at least provide the bitter lesson that you couldn’t trust a darn thing that came out of their mouths. Because who could be committed to this disease and treat the members of the community that way? Collins certainly seemed genuine at the time.
Worst Direction Taken
Jennie Spotila shows that despite the funding for the NIH research centers and the intramural study, NIH funding for ME/CFS declined last year – something that’s not supposed to happen in our new world of reinvigorated ME/CFS research at the NIH.
Worst Name for a Group
The Trans-NIH Working Group. – Is the Trans-NIH Group Working? If so, they’re keeping their work well hidden. The group is certainly not “working” for ME/CFS: if anything, it’s getting in the way. We hoped for a reinvigorated, active group that would repair the decades of neglect shown this disease. Instead we got more of the same. I don’t know why we thought this time would be different…Yes they were reinvigorated, they were in hibernation, before – now they’re somewhere around sloth-like. That’s not the kind of reinvigoration we hoped for; it is the kind of “reinvigoration” history suggested we would get, though.
When the Trans-NIH Working Group took over funding responsibilities for ME/CFS around 2000, it disbanded the three NIH-funded research groups and research funding plummeted. The group was so stingy with its purse that Senate Majority Leader Harry Reid had to step in and the little ORWH was forced to pump in money to close the deal in 2006 on what Vivian Pinn then called the smallest RFA possible.
Ten years later, a similar scenario played out when despite public commitments from the Directors of the NIH and NINDS, the “reinvigorated” group dragged its feet for a year before committing to the same pitiful amount of money (adjusted for inflation) it had provided in 2006. Three small, overburdened research centers were created. With that, they called it a day – ME/CFS research field reinvigorated!
Most Untapped Potential
The Trans-NIH Working Group wins out again with its ability to represent Institutes with budgets of tens of billions of dollars and yet fail to provide a dime to support the biggest need in ME/CFS – individual researcher grant applications.
(A special “most miserly” award goes to the Institutes in the “Working Group” which failed to provide any money at all for the research centers. (If they had just put the minimum in, we would have had two or three more Centers)).
Best Indication that Vicky Whittemore Needs More Help (and the Trans-NIH Working Group needs to do more work).
They were oh-so-close. The interest in a Fatigue Initiative was there and Vicky Whittemore and Dr. Koroshetz had gathered the players together. They couldn’t close the deal, though, and Vicky was having enough trouble getting the Working Group to spit some money for ME/CFS. In the end, the effort to produce a long-lasting NIH-wide effort on fatigue fell apart.
The Working Group – that agency-wide effort to bolster research into ME/CFS (remember them?) – was apparently missing in action.
Least Likely Plan to Succeed
The NIH plan (was it actually a plan?) to reinvigorate a field (was that really the goal?), that’s been neglected for decades by funding three small research centers and one intramural study, never had a chance of making the difference this field needs.
Most Inexplicable and Disappointing Result
We had high hopes; in fact we, at least I, knew that with ME/CFS researchers leaving up to 20 potential grant applications on the table from the NIH research centers grant applications, that the grant applications would finally start pouring into the NIH – boosting funding dramatically.
That didn’t happen. Instead, almost two years later, ME/CFS researchers are on track to apply for the fewest ME/CFS grants on record, making one wonder what the heck went wrong…
Biggest Prayer for ME/CFS and the NIH
Apparently getting nowhere with the Un-Working Group. Vicky Whittemore has turned to NINDS to create a report on how to move ME/CFS forward. Let’s pray that in the fall of 2019 that they come up with something that doesn’t require the Un-Working Group coughing up some money, and which sparks some action and gets this field moving.
Biggest Possibility Unmet – But Not Lost!
There’s lots to gripe about the NIH but we should never lose sight of the possibility it presents. As miserly as the NIH is to both ME/CFS and FM, it is still EASILY the biggest funder of ME/CFS or FM research on the planet. That fact that it can do that with two hands tied behind its back, one leg up in the air and balancing on one toe, simply illustrates how immensely powerful this institution is and the potential it presents.
Let’s not give up on that potential. We will crack the NIH, it will open its coffers to these diseases, and when it does we will all benefit immensely.
Saddest Good-bye (for me)
It was John Falk in 2017 and Anne Ortegren last year. Seeing no way out, long time Swedish (really international) advocate and former international traveler (!), Anne Ortegren ended her life after a 16-year struggle with ME/CFS in Jan. of last year.
A bold adventurer, prior to coming down with ME/CFS, Anne travelled from Costa Rica to New Zealand to the Andes and the Amazon. Ensconced within her 43 sq. meter room – she called it her “house arrest” – she was not depressed. Instead she was an active advocate with a huge rolodex of contacts she kept in touch with until her condition made it impossible.
As she became less and less functional, she just didn’t see a viable future. Her good-bye letter laid out her plight in stark detail.
“unbearable suffering; no realistic way out of the suffering; and the lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs.”
True to her advocacy roots, she ended by asking policy makers to give people with ME/CFS a viable future by increasing funding and treatment facilities. Hopefully her story – of how a young, curious, adventurous woman became relegated to the four walls of her apartment for so many years without access to medical care – will inspire others to act.
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