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

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Our goal is to end chronic pain and fatigue for millions of people across the world. Neuroinflammation, Fatigue and Pain Lab

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



(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.

[fright]
Younger---hmmm.jpg
[/fright]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

[fright]
Younger-I.jpg
[/fright]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.

[fright]
Younger---excited-for-new-year.jpg
[/fright]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:
  • [fright]
    Younger-VI.jpg
    [/fright]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.
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Attachments

Aidan Walsh

Well-Known Member
I wish he would look for (HFI) in these Patients & also check them for Insulinomas...It is sometimes not found until the Patient passes out & their Glucose/Sucrose is measured I have seen both above in Patients...
 
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Lizzie

Member
I'm pretty brain dead at the moment...have I missed something...specifically I didn't hear any mention of leptin and microglya in the brain studies. Is this part of the inflammation studies and he just didn't mention these terms. Or has he gone in a different direction for some reason?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm pretty brain dead at the moment...have I missed something...specifically I didn't hear any mention of leptin and microglya in the brain studies. Is this part of the inflammation studies and he just didn't mention these terms. Or has he gone in a different direction for some reason?
Don't worry! Both are still big deals for Younger.

Younger is checking in on leptin in this Daily Immune Monitoring ME/CFS study. That's a multi-year NIH study; it wasn't in this list of this year to-do's for that reason.

The brain temperature studies are Younger's way of getting at the microglia. Unless immune cells are infiltrating the brain, the microglia and the inflammation they cause may be the only way for the brain to increase in temperature. When you're talking neuroinflammation you're mostly talking the microglia.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
I wish he would look for (HFI) in these Patients & also check them for Insulinomas...It is sometimes not found until the Patient passes out & their Sucrose is measured I have seen both above in Patients...
What is HFI? Does it have to do with ferritin?
 

rebar

Active Member
“Peripheral immune cells are not supposed to be in the brain", any idea when this will be completed, a most intriguing idea.

From my own experience it has a rightness to it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
“Peripheral immune cells are not supposed to be in the brain", any idea when this will be completed, a most intriguing idea.

From my own experience it has a rightness to it.
This was the most jaw-dropping study to me. I was really surprised that Younger was able to take it on and I wonder who funded it.

It should be done THIS YEAR :). If it turns out to be positive I imagine that it will be a game-changer. Those immune cells could be causing the neuroinflammation we believe is present and that neuroinflammation by tweaking different pathways could apparently be causing fatigue, pain, cognitive and stimulus issues, etc.

I also imagine that if Younger finds something that Nath will look at it as well - if he isn't now. A really exciting study.
 

rebar

Active Member
It would also suggest why some treatments that calm your system have some effect. I'm still doing the bed of nails, increasing my time and feel a substantial improvement. Far from well, but much more functional. Anything that alters, or quiets the nervous system often has benefit. Maybe the B of N over rides the existing dysfunctional state by massive neurological input. Many of my symptoms are head/neck pressure feeling, neck lymph pain, and cognitive.

these are exciting times.

thanks Cort
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It would also suggest why some treatments that calm your system have some effect. I'm still doing the bed of nails, increasing my time and feel a substantial improvement. Far from well, but much more functional. Anything that alters, or quiets the nervous system often has benefit. Maybe the B of N over rides the existing dysfunctional state by massive neurological input. Many of my symptoms are head/neck pressure feeling, neck lymph pain, and cognitive.

these are exciting times.

thanks Cort
Really interesting. Glad to hear it on the bed of nails. (Others -see the blog here - https://www.healthrising.org/forums/resources/a-bed-of-nails-for-better-sleep-acupressure-mats-fibromyalgia-and-chronic-fatigue-syndrome.414/ )

Neck and head pain are pretty big for me too...
 

rebar

Active Member
yes although I don't think others on the blog are doing this as aggressively as I am, I'm up to 45 min. to an hour on a tile floor, and for the last 4 days now i've been picking up my legs to increase the pressure, (pain). It's weird because I now associate the discomfort and pain with feeling better.
 

HMBCheryl

Member
Jared Younger is my new favorite person. He is clearly brilliant. I love his sense of urgency, his commitment, and his willingness to engage with the ME/CFS/FM community. I love that he is doing clinical trials. I hope he gets one of the NIH grants!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Jared Younger is my new favorite person. He is clearly brilliant. I love his sense of urgency, his commitment, and his willingness to engage with the ME/CFS/FM community. I love that he is doing clinical trials. I hope he gets one of the NIH grants!
:)

His lab seems to be running on all cylinders right now. He's quite innovative and that's certainly one of the things they are looking for. It's going to be interesting!
 

AquaFit

Active Member
Low dose naltrexone - success may mean helping patients who've taken too many anti-cholinergic drugs over the years. https://www.ncbi.nlm.nih.gov/pubmed/21606123

Dextromethorphon - cough syrup. I'd rather control brain and body inflammation with over the counter Reactine or Quercitin (pure, not a complex) while lying down. Cough syrup sales are way down since they caused pediatric problems; I imagine the manufacturers are looking for a new market to sell to.

I do think that our blood brain barrier is more permeable than others. I think all our body barriers are more permeable. Dr. Klimas et al released a study recently showing ME/CFS patients have a 6% higher chance of getting skin cancer. Our skin barrier is more important than melanin in keeping ultraviolet rays from penetrating deep into the skin. http://eliasandwilliams.com/skin-barrier/ We suffer a lot of "leaky gut" symptoms. https://www.ncbi.nlm.nih.gov/pubmed/19560575 If Dr. Jared proves this, ME/CFS organizations should immediately create a medical teaching tool to distribute to all doctors which teaches that we should have an anti-cholinergic burden scale as geriatric patients do (or are supposed to). I've been suspecting for awhile now that some anticholinergic antibiotics and antivirals are leaking past the blood brain barrier and making patients sicker.

I do appreciate what Dr. Jared is doing - confirming inflammation will refute the psychiatric diagnosis more than the other biological markers have. This is the ME definition in the "Dictionary of Biological Psychology":
"ME Chronic muscular pain and fatigue supposedly associated with inflammatory process in brain and or spinal cord. Evidence for organic pathology has been widely accepted by legislative bodies, the law courts and patient support groups, but scientific support is unconvincing. Neurological studies (see Thomas, 1993) have instead indicated central subjective fatigue with minimal exertion without verifiable evidence of inflammatory immunological...or degenerative change. The condition is more accurately subsumed as Chronic Fatigue Syndrome but is associated with many other distressing symptoms especially - in over 75% of cases - by depression and anxiety and it presents a serious clinical challenge." - L. Jacob Herberg

Of course, right after ME is Myasenthia Gravis, which I believe is a related condition and the biological description is straightforward - acetylcholine receptor problems, and mentions a couple of drugs which may help. Not that simple though, in reality. Autoimmune conditions require a detox, not more drugs. Dr. Mark Hyman is truly a pioneer; explains here how food intolerances can cause inflammation and make the gut barrier more permeable "leaky gut". http://drhyman.com/blog/2012/01/27/inflammation-how-to-cool-the-fire-inside-you-thats-making-you-fat-and-diseased/

Useful article with a few tips on how to calm down/prevent inflammation:
http://www.mindbodygreen.com/0-25200/5-things-i-did-to-heal-from-chronic-inflammation-an-m-d-explains.html
 

AquaFit

Active Member
yes although I don't think others on the blog are doing this as aggressively as I am, I'm up to 45 min. to an hour on a tile floor, and for the last 4 days now i've been picking up my legs to increase the pressure, (pain). It's weird because I now associate the discomfort and pain with feeling better.
Dr. Perrin found inflammation in the upper back and shoulders in a study. http://www.sheffieldmegroup.co.uk/perr2008.pdf

I wonder if the pressure you're putting on your upper back by lifting your legs is helping to drain toxins out of your lymphatic system. Whatever the reason for inflammation, I do think that when we're out of homeostasis, our bodies have a hard time devoting enough energy to getting toxins out of our bodies, and they get stuck. I notice that when dogs sleep they'll often press their backs against a wall or the floor - I wonder if they're detoxing too! Heat helps the process I've noticed. Sunlamps after a massage or I'll press my back against a couch with a moistened and heated rice pad.

If ME/CFS FM are confirmed as diseases of inflammation/autoimmunity, we'll join a group of diseases which at least are medically recognized though there's not many answers for: http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/ Dr. Mark Hyman has put up a number of common sense advice videos on Youtube. He helped Bill Clinton improve his health.
 
I've only scanned the above so please excuse the following.

ME is Myasenthia Gravis, which I believe is a related condition and the biological description is straightforward - acetylcholine receptor problems, and mentions a couple of drugs which may help
Your reference to Myasenthia Gravis is interesting since one form of the disease is autoimmune and another form is not (Angela Vincent etc Oxford University). Fluge's work re retuximab is referred to in the New Scientist as follows
These white blood cells make antibodies, and Fluge suspects that some antibodies made to combat infections may also recognise something in PDH and disable it.
. Therefore, some forms of ME/CFS are autoimmune and this would be consistent with the fact that they respond to rituximab which removes the white blood cells which make antibodies. In terms of treatment, autoimmune forms of Myasenthia Gravis are currently treated with immunosuppressants; however, recent research on treating autoimmune diseases has focused on turning off the autoimmune response (google turning off autoimmune diseases and you'll see research re diabetes etc).

Chris Armstrong, Naviaux, Hanson and Yamato seems to be suggesting that people with ME/CFS have a metabolic disease (burning protein rather than carbohydrates). Armstrong (and others?) is suggesting that this metabolic disease results in low gut acidity, which results in translocation of nasties into the blood stream, which results in metabolic disease ---self perpetuating cycle (check out Armstrongs webinar).

Jarred's research to
solidify the notion of ME/CFS as a neuro-inflammatory disorder and lead the way to new treatment options
would appear to offer another explanation for the metabolic disease i.e. leaky brain barrier resulting in a sepsis type reaction (rather than material from the gut resulting in a sepsis type reaction).

Great to see this research being carried out, good luck to those involved.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I've only scanned the above so please excuse the following.



Your reference to Myasenthia Gravis is interesting since one form of the disease is autoimmune and another form is not (Angela Vincent etc Oxford University). Fluge's work re retuximab is referred to in the New Scientist as follows . Therefore, some forms of ME/CFS are autoimmune and this would be consistent with the fact that they respond to rituximab which removes the white blood cells which make antibodies. In terms of treatment, autoimmune forms of Myasenthia Gravis are currently treated with immunosuppressants; however, recent research on treating autoimmune diseases has focused on turning off the autoimmune response (google turning off autoimmune diseases and you'll see research re diabetes etc).

Chris Armstrong, Naviaux, Hanson and Yamato seems to be suggesting that people with ME/CFS have a metabolic disease (burning protein rather than carbohydrates). Armstrong (and others?) is suggesting that this metabolic disease results in low gut acidity, which results in translocation of nasties into the blood stream, which results in metabolic disease ---self perpetuating cycle (check out Armstrongs webinar).

Jarred's research to would appear to offer another explanation for the metabolic disease i.e. leaky brain barrier resulting in a sepsis type reaction (rather than material from the gut resulting in a sepsis type reaction).

Great to see this research being carried out, good luck to those involved.
Thanks for all the info Frances. :)
 

AquaFit

Active Member
I've only scanned the above so please excuse the following.



Your reference to Myasenthia Gravis is interesting since one form of the disease is autoimmune and another form is not (Angela Vincent etc Oxford University). Fluge's work re retuximab is referred to in the New Scientist as follows . Therefore, some forms of ME/CFS are autoimmune and this would be consistent with the fact that they respond to rituximab which removes the white blood cells which make antibodies. In terms of treatment, autoimmune forms of Myasenthia Gravis are currently treated with immunosuppressants; however, recent research on treating autoimmune diseases has focused on turning off the autoimmune response (google turning off autoimmune diseases and you'll see research re diabetes etc).

Chris Armstrong, Naviaux, Hanson and Yamato seems to be suggesting that people with ME/CFS have a metabolic disease (burning protein rather than carbohydrates). Armstrong (and others?) is suggesting that this metabolic disease results in low gut acidity, which results in translocation of nasties into the blood stream, which results in metabolic disease ---self perpetuating cycle (check out Armstrongs webinar).

Jarred's research to would appear to offer another explanation for the metabolic disease i.e. leaky brain barrier resulting in a sepsis type reaction (rather than material from the gut resulting in a sepsis type reaction).

Great to see this research being carried out, good luck to those involved.
I wasn't aware of Angela Vincent, thanks for pointing her out. I see her research includes acetylcholine which is what I've been thinking plays a big part in our homeostasis.

Autoimmunity is a big up and coming research area. In North America there's apparently 240 pounds of chemicals generated or imported per person per day. Flame retardants, pesticides, etc etc. It's unreal. Autoimmunity occurs in the lymphatic system. It's the sewer system of the body. If there's an event that happens in the womb then we can suffer birth defects (mother's virus, infection, mosquito spray or drug exposure etc.) and we can be predisposed to having an inefficient sewer system. When the sewer system leaks or can't function efficiently, or when we are physically injured and closed systems expose their contents to one another (toxins from lymph system mix with blood stream, for example) then we're screwed. The simplest thing that researchers have tried for decades is to tinker with acetylcholine levels as it's the major neurotransmitter for all body systems. It hasn't worked. It's more complicated, but we're missing a piece of the research puzzle. I haven't seen one ME/CFS study that considers the burden of medications and chemicals on the body. More women supposedly get CFS/ME. Maybe because personal grooming products and makeup are a toxic soup.

There will never be enough research in our lifetime or thereafter to make progress in ME/CFS unless chemical and drug toxins are considered. Even Ron Davis research - there are so many dimensions that diseases can express themselves in in the body that even the same disease is expressed differently in every individual. Supercomputers can't sequence genes and unfold proteins and sequence CRISPR, etc. etc. in our lifetime. We need quantam computers for that which won't be commercially available for 20-30 years. We're also at a stage now where we need artificial intelligence instead of doctors to consider all the gene mutations, the available specialists and the symptoms and lab reports to make intelligent medical options for us. The only reason we go from doctor to doctor is that the egotistical doctor culture and the greedy pharmaceutical culture are surpressing helpful information and every researcher and clinician mostly chooses to reinvent the wheel within their own careers.

ATI and MIT created an artificial intelligence software program in the 1970s to diagnose patients without a doctor, just a trained operator. It was apparently 30% more successful at the time. Whereas family doctors don't know the experience and focus of the specialists they send patients to, an AI program would know all that, even their waiting times. Some naturopaths use the original progam now, though it's not as souped up as it could be and connected to the mainstream medical world. Can you imagine how much more accurate it would be now that we have so many more avilable diagnosis and understandings of workings of the body and additional lab tests? BTW this is the body that decides in what category to place ME/CFS in America, not the government: http://www.rcpsus.com/executive-committee I'm puzzled why ME/CFS organizations don't appeal to this body instead of banging their head against the wall with NIH which doesn't make that decision. Of course, stepping on their colleagues toes and exposing the iatrogenic causes of worsening of ME/CFS due to medications prescribed - wouldn't do for the fraternal knighthood. Seriously. Western doctors have a knighthood fraternal order available to them. Bizarre historical leftover, reeks of self-importance and self-worship. http://www.rcpsus.com/become-a-member/become-a-knight

Regarding Rituxamab - they've made a good penny on pumping chemotherapy drugs into autoimmune patients of all kinds. There's a 30% success rate for CFS/ME apparently. I wonder if they're finding results with parapeoplastic autoimmunity and simply calling it CFS/ME. That's autoimmunity which shows itself in cancer patients before the cancer actually shows itself in available tests. If researchers are paying attention they may be able to develop tests that detect cancer in the body before it ever does damage and save many, many lives. Unfortunately, they're making ME/CFS patients who don't have cancer unecessarily much much worse along the way.

Autoimmune disorders: http://www.webmd.com/a-to-z-guides/autoimmune-diseases Explanation of autoimmunity and the lymph system which also clears cancer: https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=123 I don't understand why researchers continue to try to turn off the alarm bells in the body by killing the immune system.
 
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Katie

Active Member
I do appreciate what Dr. Jared is doing - confirming inflammation will refute the psychiatric diagnosis more than the other biological markers have. This is the ME definition in the "Dictionary of Biological Psychology":

Unfortunately, depression itself may be initiated by brain inflammation. I met with a psychiatrist every month for many years re family dynamics and clinical depression. I'll never forget what he said the first time we met. "all disease starts in the brain". He does believe my ME/FM has been caused by stress leading to depression leading to central sensitivity syndrome etc. I don't see him anymore, he just refuses to acknowledge that my underlying viral load is wrecking havoc in my system. I became very sick after a trip to Myanmar but again "I wouldn't have gotten sick if not for my depression". You cannot win with a psychiatric point of view re disease. I do however, give him a lot of credit for helping me in many other ways.
 

Aidan Walsh

Well-Known Member
What is HFI? Does it have to do with ferritin?
(HFI) hereditary Fructose Intolerance I have seen it in CFS & EDS3 Patients it is a Genetic Born condition Boston University has an (HFI) Lab...The body cannot process any form of Fruits Fructose Sugars there are only some forms of Glucose allowed it is a Gene handed down at Birth...I have also seen lately one

guy with a Normal History of Glucose blood tests he collapsed at a friend's Office Paramedics were called they then recorded his Glucose hit the floor to 1.6 he was later diagnosed with a Benign Insulinoma of his Pancreas he was also previously diagnosed with EDS3. A cheap way of seeing an Insulinoma is an

ultrasound but there are more expensive tests involved & it can be missed by 72 hours in Hospital settings fasting & measuring Glucose so all tests are not 100% reliable but if found Surgery can Cure this...Another Woman diagnosed with EDS3/MCADshe later had a Chromogranin 'A' blood test she was

diagnosed with Cancer I think Carcinogenic Syndrome? Last, Dr. Ian Carroll now finding Leaks in the Dura lining of Brains Spinal Chord the Spinal fluid is leaking he has on Video YouTube 2 links to his work also he did a Podcast with 3 Doctors from USA on Facebook last few days he is at Stanford he finds this in

CFS.Fibro/EDS & says it is also involved in Parkinson's & some with diagnosed Meniere's...I think Dr. Jarred Younger knows Dr. Ian Carroll well I think they Published together on Leptin in 2013...
 
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