Jarred Younger's Big Year - ME/CFS and Fibromyalgia Researcher Looks Ahead

At the IACFS/ME Conference Dr. Montoya said something about trying to get Younger back to Stanford. I don't think that's going to happen. Younger is living proof that specializing in fibromyalgia and chronic fatigue syndrome (ME/CFS) can work. A couple of years after the lab opened he's got no less than 22 people working for him. For all his good work at Stanford he's getting ten times as much work done at the University of Alabama at Birmingham. I think he's staying put.

In a recent video Younger listed ten things his lab will get done this year - not next year or the year after but this year. If he can do that his lab will be the energizer bunny in a medical field that often seems to be mostly populated by turtles.

The Big Ten

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(1) Does low dose naltrexone work in ME/CFS?

Younger practically birthed the use of LDN for FM with his two FM studies. Noticing that LDN often helps both the pain and fatigue levels of FM patients, he's trying it in this pilot trial. The small 30 person trial won't definitively answer whether LDN works in ME/CFS but it will let Younger know if he should proceed further with a larger trial.

The trial lasts for seven months, you should live near enough to Birmingham, Alabama to get to the lab once a month, and you have to be predominantly affected by fatigue, not pain. Everyone will get the drug at some point.

If you’re interested in being in the study contact Dr. Luke Parkitny via email at: ldnmecfs@gmail.com or phone at: 205-530-8006 and/or check out the questionnaire here.

(2) Another Low Dose Drug for FM? Dextromethorphan for Fibromyalgia (and possibly ME/CFS)

"Our results provide evidence that dextromethorphan could be clinically effective for FM, particularly in combination with other agents that act peripherally to reduce sensitization of nociceptors," Staud 2005

A 2005 study suggested that dextromethorphan (DXM), better known as an ingredient in cough medicine, might be helpful in FM, but that's as far as it went until Younger picked it up again this year. Dextromethorphan is already used for pain relief and addiction, and at high doses can make one decidedly loopy (it’s a dissociative agent). Like LDN, Younger's planning to use it in low doses (30 mg/day).

Younger is coming at DXM from a microglial angle; studies indicate DXM is able to quiet the microglia down and keep them from pouring out pro-inflammatory cytokines. If it can do that it may be able to stop some of the neuroinflammation Younger and others think is occurring in FM.

Unlike LDN, DXM has the added benefit of being safe for people using opioids. Like LDN, a successful FM trial would eventually lead to an ME/CFS trial.

(3) Endotoxin Immune Test For FM

Researchers are starting to come around to the understanding that the immune system matters in FM. It's no surprise that Younger is breaking new ground in this area. He believes that activation of the immune cells in the brain - the microglia - may play a critical role in FM.

Younger will be hunting for evidence of immune activation in the blood in this study, though. He plans to insert low doses of an endotoxin (lipopolysaccharide -an immune activator) to tweak the immune systems of FM patients and healthy controls for a couple of hours and see how they respond. Endotoxins are bacterial toxins that send our immune systems into a mild frenzy. They're believed to be responsible, for instance, for the inflammation resulting from leaky gut in ME/CFS.

Younger wants to know if FM patients’ immune response is as touchy and exaggerated as their pain response. Clearly excited by this project, Younger stated that if this study is successful it could give us some "incredibly important information about what to target in order to effectively treat and ultimately cure" FM. He called it a "very important study".

(4) Tracking Immune Cell Infiltration into the Brains of People with ME/CFS

“Peripheral immune cells are not supposed to be in the brain" Jarred Younger

Put the immune cells from the body into the brain and you've got real problems. Those immune cells sneaking past the blood-brain barrier can wreak havoc on the tissues in the brain causing pain, fatigue, cognitive issues and worse….Younger believes a wholesale entry of immune cells into the brain could be causing the devastation the more severely ill experience.

Younger isn't the first to ask whether immune cell infiltration might be involved in ME/CFS. At one point Dr. Nath of the NIH Intramural Study suggested that could be happening but nobody, except perhaps Nath, is looking into this.

Younger has clearly convinced some of his compadres at UAB to lend him some powerful machines. He's going to draw immune cells out of ME/CFS patient's blood, put a tracer on them, inject them back into the patient and use a PET scan three days later to see if they show up in the brain. (Why has no one done this before?)

Finding those immune cells in the brain will indicate that either the blood-brain barrier has broken down or the immune cells have found another way to get in. Either way it will solidify the notion of ME/CFS as a neuro-inflammatory disorder and lead the way to new treatment options.

(5-8) The Brain Temperature Studies

The next four studies all have to do with measuring brain temperature in ME/CFS. Younger said it might seem like it's cheating a bit to list four studies on brain temperature separately, but I don’t think so. For one he explained that they're all different studies done on separate groups, and they're all funded separately.

Besides, this is not just about assessing neuroinflammation; it's about validating and expanding upon the study Dr. Komaroff felt was the most important study of the past ten years. This is a biggie and Younger is going about proving it in a novel way.

Other researchers are introducing tracers that bind to receptors in the brain, but Younger is opting for a cleaner, non-invasive approach. No drugs needed - simply pop the patients’ brains into the scanner (without removing them from the body, of course) and measure the temperature as precisely as possible.

(5) The Ramsey Award Winning Solve ME/CFS Initiative Study - Younger will use magnetic resonance spectroscopy (MRS) to determine if the whole brain temperature is higher in ME/CFS, if just some areas of the brain are hotter, if there's more variation in heat than normal from brain-site to brain-site and if the degree of fatigue is associated with increased whole-brain temperature. Not only is this type of brain imaging safe (completely non-invasive), it’s also inexpensive (whoa) - always good news for cash-strapped ME/CFS researchers.

Because he's using MRS, Younger's study will also gather the first whole brain metabolic data ever in ME/CFS - which he will open to use by other researchers. Shungu used MRS imaging to determine that antioxidants are low and lactate levels are high in several areas of the brain in ME/CFS.

VIDEO - See Younger explain how he expects to measure brain temperature in ME/CFS patients in an April 2016 video. (Check out that sparse office behind him; it looks about the same as in the Feb 2017 video - Younger is obviously not spending his time decorating. The jacket is the same too…the shirt, however, has been changed….).

If Younger finds evidence that brains are heating up in ME/CFS, the next step will be to a) use this non-invasive and as Younger said inexpensive technique to biologically validate the progress ME/CFS patients make on treatments and b) try treatments that can cross the blood-brain barrier that might be able to cool down those feverish )) brains ME/CFS patients have.

(6) Brain Temperature in Traumatic Brain Injury

(7) Brain Temperature in Rheumatoid Arthritis - Eighty percent of RA patients experience severe fatigue plus even when drugs resolve the joint problems in RA, the pain and fatigue can remain - a sign, perhaps, that the inflammation has spread to the brain.

(Although Younger didn't explicitly say so this study could have overtones for fibromyalgia. We know that a percentage of RA patients come down with fibromyalgia. (FM appears to show up in a subset of people with every chronic pain disease.) Finding similar processes at work in ME/CFS/FM, RA and other diseases would, of course, be a great way to expand interest in ME/CFS/FM.)

(8) Brain Temperature in Pediatric Rheumatic Disease - Ditto for this study. Many of the children with this disease experience high levels of pain and fatigue. Years ago ME/CFS researcher Andrew Lloyd asserted that the fatigue, pain, sleep, cognitive, etc. symptoms in ME/CFS were "brain symptoms". Are they? Younger is attempting to show that - whatever disease they occur in - symptoms like these are probably produced by neuroinflammation - and that finding ways to reduce neuroinflammation will help, if not cure them.

The Brain Studies - With these four studies Younger will be able to do something that's rarely done in chronic fatigue syndrome (ME/CFS): compare and contrast ME/CFS findings with those of the three other disease groups using the same techniques. We may see different areas of the brain light up or, if inflammation in certain areas of the brain causes fatigue and pain, we could see the same or similar areas light up as in ME/CFS.

The big missing disease in this group is, of course, fibromyalgia. Studies do suggest that FM is a neuroinflammatory disorder, but while Younger had The Solve ME/CFS Initiative (SMCI) to go to for ME/CFS funds, no non-profit FM group that I'm aware of funds research. Why so many private research foundations (SMCI, Open Medicine Foundation (OMF), Simmaron Research Institute, Chronic Fatigue Initiative) have sprung up in ME/CFS but not in FM is a mystery to me.

Finding that immune cells are infiltrating into the same areas of the brain that have heated up would be a stunning finding that would garner much attention. Time will tell, but it's possible that before the year is out Younger could have validated the neuroinflammation present in ME/CFS, showed how it's different or similar to other diseases and identified a potential cause for it.

(9) NIH ME/CFS Research Center Application

Younger, like others, will be applying for an ME/CFS research center grant, perhaps in tandem with another group. (It looks like research groups will be merging together to apply for these grants.) Younger brings some real assets to bear: he's a young researcher - the NIH is probably going to like that - with a strong and expanding research program. He's shown he can get NIH grants and grants from disease groups. He isn't affiliated with any ME/CFS research group and it'll be interesting to see who he hooks up with.

(10) A Video Every Other Week

Other research groups might take note. Regularly creating short videos is an excellent way to keep the ME/CFS and FM patient communities informed and engaged in their work. Not only do they help Younger gain support but they also help him find participants for his studies. Sign up to follow Younger and his work here.

Other Studies

Younger has more going on:

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  Daily Immune Monitoring ME/CFS Study - Working off his big multi-year NIH grant Younger's daily immune monitoring study will determine what parts of the immune system are making ME/CFS patients crash. His last daily immune monitoring study suggested that leptin could be driving the whole shebang in ME/CFS.
• Daily Immune Monitoring Gulf War Illness (GWI) Study - Ditto with this study.
• Botanicals GWI Study - vets will take a variety of botanicals to see if they help with their fatigue, pain and other symptoms.
• Fibromyalgia Low Dose Naltrexone Plus Study - study attempts to find who benefits most from LDN and other possible microglial inhibitors.
• Effects of Opioid Painkillers - brain scans are being used to determine opioids’ effects on the brain.

Source:https://www.healthrising.org/forums/threads/jarred-youngers-big-year-me-cfs-and-fibromyalgia-researcher-looks-ahead.5257/

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