The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Brain Injury: Pentagon Officials Should Have Their Own Heads Examined

Discussion in 'Other Health News and Research' started by *GG*, Feb 19, 2014.

  1. *GG*

    *GG* senior member

    Concord, NH
    Invasive brain implants? Anything to put off considering safe and effective natural treatments for our war veterans!

    According to NIH, approximately 5.3 million Americans—more than 2% of the U.S. population—are living with a disability that results from traumatic brain injury (TBI). This number includes 280,000 soldiers who suffer from combat-related TBI. And, in what experts are calling the “concussion epidemic,” 25,000 school-age football players each year suffer from concussions that require emergency treatment. Other young athletes suffer as well.

    To date, the Pentagon has favored drugs to treat brain damaged vets. Many of these drugs are used off-label, which means the FDA has not approved their use for this purpose.

  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Unfortunately I do not know that alternatives work any better. Everything needs more research. The problem is that the research and funding for that research are not available. Its not just ME that has this problem, though we seem to be at the bad end of that problem.

    Invasive brain surgery would seem to be at the far edge of the unacceptable though. It may be far worse than the problem. Off-label use of psychotropics is something that should be considered experimental as well. Why is this considered acceptable?

    Now I can understand someone who needs answers trying psychotropics, herbs or HBOT, etc. I think that should be a patient's right. What seems to be concerning is that there is a coercive agenda here. Am I interpreting that right? Forcing someone onto psychotropics or brain surgery is abusive medicine at best.
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    the brain surgery problem makes me think of cochlear implants, which are encouraged by doctors with apparently no clear understanding of the limitations, and the problems which arise when deaf children have no first language (i.e. they are not taught or exposed to a visual language particularly not during the formative years, and they do not gain good enough hearing to assimilate, or fully assimilate, a spoken language).

    This, by the way, is one origin of the "alternate views of disability and health" which we see in the literature, and should try to understood... however it cannot be generalized to other populations without consulting them, as most people with ME or other chronic illnesses generally do view ourselves as disabled and in need of a cure...

    Basic respect would typically mean doctors and researchers treating people the way they want to be treated, as to being in need of a cure or not.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Not sure what I think of this. Deep-brain stimulation, using implanted devices, is becoming fairly common for Parkinson's disease. Whether there is any coercion or deception involved with the veterans is unclear. Injured military personnel are sometimes given preferential treatment to civilians, in being given access to treatments that civilians cannot access, so it may in fact be the case that they are privileged in being given these treatments. I just don't know enough about it.

    Whist I am a great enthusiast for natural medicine, and it is almost always my first choice, I don't know whether there is any effective natural treatment for brain injury.
    peggy-sue likes this.
  5. Wayne

    Wayne Senior Member

    Ashland, Oregon
    MeSci, I was quite impressed by what happened to a West Virginia coal miner who was trapped in a low oxygen environment, and suffered major brain damage and went into a coma. He was given high doses of omega 3 oils and made a remarkable recovery. I just did a quick search and found the following three references to omega 3's being used for TBI. --- I've also read that Liposomal Vitamin C has been reputed to be able to bring people out of comas, which I would infer to be a kind of brain injury.

    Here's an article from the Chicago Tribune - Omega-3 played a big role in healing coal miner's brain

    Here's another article --- First New Treatment for Concussion in Decades

    Here's a snippet from this article:
    And another --- Teen’s Brain Saved by Omega-3s?


    Various kinds of tapping on the meridians around the brain can also help restore equilibrium to a damaged brain. "Balancing the Cortices" is a technique that I've found to be very helpful and relaxing. The 7-minute video on the link gives a quick review of how it works, and why it can be so helpful for people with brain and/or neurological issues.
    Last edited: Feb 19, 2014
    WoolPippi likes this.
  6. Wayne

    Wayne Senior Member

    Ashland, Oregon
    If you go to the 7:23 mark in the following video, it will describe how a remarkable man is trying to raise funds for state of the art TBI clinics for veterans. When I first saw the technology, I couldn't help but think how helpful it could be for pwCFS.

    Invisible Wounds of War - 13 1/2 minute video from CBS News 60 Minutes
  7. Wayne

    Wayne Senior Member

    Ashland, Oregon
    I found an article on the TBI clinics that are being built to treat veterans and came up with the following snippet: --- --- The full article makes it appear that veterans are already getting treatment enabling them to improve significantly.
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA

    I agree that there are not always natural medicine options (and not often well-studied options). What I was worried about was that it sounded from the article that there might not be a lot of good evidence for what they are doing. However,

    Using drugs off-label is not, in and of itself, a concern and I think the article is written in alarmist tone, as it is trying to market something else. However it is well known that psychiatric drugs are the worst offenders among all drugs, for having conflicts of interest which destroy the usefulness of the studies.

    From what I know of brain implants, it is not easy and in the other situation I mentioned, the risks may not be well explained (to the responsible person). Maybe it's better when the patients are adults and soldiers, but in my experience, veterans are not treated respectfully by the VA and often have to fight for appropriate care.
  9. Hip

    Hip Senior Member


    Very interesting links that you provided about very high dose omega 3 (around 15 grams of DHA and EPA daily) being able to repair traumatic brain injury, and rescue people from coma.

    I normally take around 500 mg of DHA and EPA daily in the form of cold liver oil, and sometimes as much as 1000 mg daily. However, I have never tried doses of much higher than that.

    In Norway they found that there were no adverse effects from DHA and EPA at doses as high as 6.9 grams per day. Ref: here. So I might experiment with higher doses of say 3 or 4 grams per day.

    I am interested in this, as I had an episode of viral meningitis around 8 years ago, which caused some brain damage leading to permanent loss of certain mental faculties. I have always hoped I might regain these faculties by some means one day.

    Interestingly, hyperbaric oxygen therapy (HBOT) has also been shown effective in repairing the damage from stroke — even decades after the stroke occurred. It seems that brain cells damaged by stroke lack to energy to repair themselves, but they do not die, but stay in a sort of state of suspended animation. The high levels of oxygen that flood into the brain during HBOT brings these damaged brain cells back to life, even decades later. See this article of HBOT for stroke damage repair:

    Oxygen chamber can boost brain repair years after stroke or trauma

    This is also interesting:

    Chemical reaction keeps stroke-damaged brain from repairing itself

    Here they found that nitric oxide not only damages neurons, it also blocks the brain’s ability to self-repair.
  10. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Hi @Hip, thanks for all the links. This topic is definitely a high priority of mine. I would love to try HBOT, but after researching it fairly extensively, and checking with the local hospital which had just gotten an HBOT chamber, I discovered it wouldn't be covered by insurance and would cost $2K for a single session! :eek:

    There was a thread posted a couple years ago that I keep in mind regarding head/brain injuries entitled, "Could hormone therapy be the answer for some?". It focuses on the prevalence of hypopituitaryism in people who've experienced head injuries. I don't know whether this would hold true for brain infections or not, but it seems reasonable to assume it could. Here's a snippet from that thread:
    Last edited: Feb 21, 2014
  11. Hip

    Hip Senior Member

    In terms of hypopituitarism (which can be caused by head injuries or brain / CNS infection), a while ago I was looking at the possibility of adult human growth hormone (HGH) deficiency:

    The symptoms of adult human growth hormone deficiency are:

    Adult Human Growth Hormone Deficiency Symptoms

    Psychological and Cognitive Symptoms
    Anxiety, apprehension, nervousness.
    Shyness, withdrawal from others, feelings of social isolation.
    Sadness, hopelessness, depression.
    Labile emotions (ie, emotions change rapidly and unpredictably, and can be exaggerated).
    Poor memory and impaired concentration.

    It is unknown whether this impairment in psychological well being is associated specifically with GH deficiency or is due to another factor associated with hypopituitarism.

    Decrease in sexual function and interest (low libido). This is associated with hair loss and baldness in men.

    Energy Levels
    Fatigue, tiredness, and reduced vitality.
    Decreased energy due to decreased metabolic rate.
    Lower tolerance to exercise (due to decreased cardiac output), decrease in strength and stamina.

    High levels of LDL (the "bad") cholesterol.
    Changes in blood cholesterol concentrations (increase in LDL and decrease in HDL).
    Low blood sugar (dizziness or fainting weakness or tiredness, headaches).
    Insulin resistance.
    Elevated triglyceride levels.
    Increased sensitivity to cold or heat.

    Heart and Circulation
    Increased arterial plaque and blood pressure.
    Increased vascular wall thickness.
    Weakened heart muscle contraction and heart rate.
    Heart problems.
    Cool peripheries (cold hand and feet).
    Poor venous access.

    Decreased muscle mass (muscle size) and strength.
    Reduced exercise performance.

    Body Weight and Body Fat
    Decreased lean body mass.
    Increase in weight and fat deposition all over the body, particularly, about the waist and trunk.

    Decrease in bone density, making the bones brittle and weak.
    Increase in rate of fracture in middle age and beyond.

    The skin becomes dry, thinner, looses its elasticity, and fine lines and wrinkles make an appearance.

    Baldness (in men).

    Sleep problems.

    Sources: 1, 2, 3, 4, 5, 6.

    There is also this questionnaire to determine whether you are affected by low growth hormone:

    Adult Growth Hormone Deficiency Assessment Questionnaire:
    I have to struggle to finish jobs
    I feel a strong need to sleep during the day
    I often feel lonely even when I am with other people
    I have to read things several times before they sink in
    It is difficult for me to make friends
    It takes a lot of effort for me to do simple tasks
    I have difficulty controlling my emotions
    I often lose track of what I want to say
    I lack confidence
    I have to push myself to do things
    I often feel very tense
    I feel as if I let people down
    I find it hard to mix with people
    I feel worn out even when I’ve not done anything
    There are times when I feel very low
    I avoid responsibility if possible
    I avoid mixing with people I don’t know well
    I feel as if I am a burden to people
    I often forget what people have said to me
    I find it difficult to plan ahead
    I am easily irritated by other people
    I often feel too tired to do the things I ought to do
    I have to force myself to do all the things that need doing
    I often have to force myself to stay awake
    My memory lets me down
    Last edited: Aug 27, 2017
    Sancar, Angel27 and Wayne like this.
  12. Dreambirdie

    Dreambirdie work in progress

    N. California
    Jamie Deckoff Jones has used oxygen therapy in various forms and has written about it in the following article. At this point, she's prescribing an O2 concentrator, that can be used at home.

    "In my current practice, I treat ME or Myalgic Encephalomyelitis (aka CFIDS or CFS), a neuroimmune illness with pathophysiological similarities to autism, Gulf War Illness, chronic Lyme Disease and Multiple Sclerosis. I prescribe a concentrator or tanks to deliver the highest doses of oxygen I can get without a chamber. Some of my patients are completely or nearly homebound. Ease of access is essential for these patients as travel to a chamber isn't possible.

    An oxygen concentrator delivers oxygen through a tube to the patient via a cannula in the nose, a simple mask, or a non-rebreather mask. A non-rebreather mask has a reservoir which holds pure oxygen until the breath is taken; it has one way valves to prevent inspiration of ambient air and to allow exhalation gases out so carbon dioxide is not retained. Tanks are quieter, but at the high flows I'm using, need to be replaced frequently. Concentrators are noisy, but easier to move around and never run out, as they extract the oxygen directly from the air in the room. Concentrators can be portable, but most portables only produce 1-2 L/min (liters of flow per minute). The delivery device needs to match the flow rate. A nasal cannula can be used from 1-4 L/min (more than 2 L/min is hard on the nose) delivering 24-36% depending upon the flow rate and how the patient breathes. Most concentrators go up to 5 or 6 L/min and can be used with a simple mask (delivering up to 40% oxygen). Some concentrators go to 10 L/min and can be used with a non-rebreather mask (delivering >60% oxygen depending upon how the mask fits). A non-rebreather mask should only be used if there is enough flow to keep the bag inflated (>8 L/min).

    There is a small amount of literature to support the efficacy that I observe in practice. 100% normobaric oxygen by demand valve has become approved therapy for cluster headache and there are a few papers in the literature supporting the use of normobaric oxygen for other indications, e.g. all cause headache [9 ], trigeminal neuralgia [10 ], mitochondrial myopathy [11] [12] and interestingly, schizophrenia [13]. A few studies show normobaric oxygen to be comparable to HBOT and others suggest it is less powerful, but still with positive effect. [14] [15].

    The evidence based literature may be meager for many conditions that might benefit from a trial of home oxygen, however, it is an exceedingly low risk thing to try. My patients are canaries in the coal mine. The risk benefit ratio is more favorable by far than for any pill I can prescribe. Oxygen supplementation is a perfect intervention for fragile people who need to start low and go slow with new therapies, as the dose can be easily titrated."
  13. Hip

    Hip Senior Member

    Very interesting, Dreambirdie.

    I did not realize that normobaric oxygen can have useful effects. This is interesting, because these days you can buy an oxygen concentrator that will generate up to 90% oxygen for around £250. (Air is 21% oxygen).

    Though it is hard to imagine that breathing purified oxygen at normal pressures could have the same benefits as hyperbaric oxygen therapy (HBOT). It is the high pressure of HBOT that forces oxygen to be dissolved in your blood plasma.

    Though I guess if you are breathing purified oxygen from an oxygen concentrator at normal atmospheric pressure, you could do this for many, many hours every day. Whereas with hyperbaric oxygen chambers, which use pressures of around 3 atmospheres (44 psi), although you will get much more oxygen dissolved in your blood, you normally only do a few one hour sessions in such chambers per week.

    Hyperbaric oxygen does have benefit for ME/CFS:

    The efficacy of hyperbaric oxygen therapy in the management of chronic fatigue syndrome

    So it would be interesting to see if normobaric oxygen helps.

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