New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways

Discussion in 'Latest ME/CFS Research' started by JaimeS, Jun 2, 2015.

  1. adreno

    adreno PR activist

    Messages:
    4,841
    Likes:
    11,069
    I see. I have tried supplementing hydrolyzed collagen, but it doesn't improve my symptoms. I do crave protein (mostly meat) like a caveman.

    I was always hypermobile, not sure its gotten worse since I got sick. There is also age to consider (I'm in my forties now).

    Hypermobility/stretchy skin seems common in ME. Quite a few threads on it here.
     
    MEMum and JaimeS like this.
  2. ChrisArmstrong

    ChrisArmstrong

    Messages:
    67
    Likes:
    638
    Yes it is a common symptom. It could be a susceptibility factor for the disorder, if collagen acts as a resource from amino acids but the collagen is already depleted then it might hinder the adaptability of energy metabolism when glycolysis of lipolysis are decreased/inhibited.

    Supplementation is probably something that needs to be determined at a later date.
     
    MEMum likes this.
  3. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,207
    So what do you think?

    (making some poorly educated wild speculation)

    Is this some problem with absorption of sugars in a certain part of the digestive tract?
    Some liver problem (storing glycogen)?
    Some mitochondrial problem?
    Some dysregulation/signalling problem?

    Oh and by the way I cannot tolerate low carb diets. They make me feel terrible: fatigue is much worse, poor mood, brain fog.
     
    JaimeS likes this.
  4. Gijs

    Gijs Senior Member

    Messages:
    652
    Likes:
    1,332
    Chris, do your patiënts also have persistent tachycardia and breathing problems?
     
  5. ChrisArmstrong

    ChrisArmstrong

    Messages:
    67
    Likes:
    638
    A combination of those things but I can't speculate too much at this point. I will think about putting together a hypothesis paper, need to discuss it with a few people and my group first. Might try and get one out in the next month or so if everyone is ok with it.
     
    merylg, Vasha, JaimeS and 1 other person like this.
  6. ChrisArmstrong

    ChrisArmstrong

    Messages:
    67
    Likes:
    638
    No I don't believe so, why do you ask?
     
  7. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,283
    This glucose thing is definately a problem for a subset in my eyes....it just makes sense...without sugars going to your brain you have more problems and more symptoms etc.

    Why is this happening though?????

    Did the bugs cause brain damage? Did they damage the immune system? Did trigger autoimmunity?

    What is the cause and perpetuating factor?
     
  8. Gijs

    Gijs Senior Member

    Messages:
    652
    Likes:
    1,332
    Thx for your reply. Because that is a symptom of ME (POTS?) too. So your looking in another subgroup of 'ME'' patiënts, I think.
     
    Mij and Justin30 like this.
  9. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,283
    Dyspenea and tachycardia are both symptoms of POTS and Dyautonomia is mentioned in both the CCC and ICC Criteria.

    To add to this a couple of groups are looking inton the Gut Brain connection via the Vagus Nerve which is part of the Autonomic nervous system which is in control of all process that we unconciously dont think about.

    Would this ANS dysfunction not reperesent the true multisystem nature of real ME?
     
    JaimeS likes this.
  10. Gijs

    Gijs Senior Member

    Messages:
    652
    Likes:
    1,332
    I agree with you. But if ME patiënts must have POTS (ANS) problems) Then Chris his preliminary findings are not representative for this group. It is difficult. I think for the POTS/ME group the cause has already been found autoimmunity against receptors.
     
  11. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,437
    New Zealand
    That's very interesting - your theory linking joint hypermobility and ME.

    So, me, my son and my daughter are all very flexible and we all got ME in the same month. My husband is not flexible at all. He did not get ME (although he didn't get what we think was the precipitating virus either).

    Since getting ME, my son has developed very bad stretch marks on his back - although he is 16, he has been growing quite a bit. He continues to get more stretch marks and is still quite significantly affected by ME. He was the one who got the worst joint pain - and still does sometimes now.

    I got new stretch marks on my thighs after getting ME - although I put on a few kg when I became ill (but just a few kg). And my daughter who has now mostly recovered got new stretch marks around her armpits, and she didn't change weight really. I hadn't really put all that together until now.
     
    MEMum likes this.
  12. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,437
    New Zealand

    @ChrisArmstrong, I think you might find that many of your trial participants do have orthostatic intolerance (including POTS). My son and I do (my daughter is borderline). And it seems on PR that possibly even the majority do.

    Chris O'Callaghan in Melbourne believes hypermobility is linked to/the cause of orthostatic intolerance - due to the stretchiness of blood vessels not providing enough resistance to ensure blood gets to the brain when a person moves from supine to standing.

    It could fit with your hypothesis. I've always had a bit of a tendency to dizziness upon standing and occasionally fainting. But the full-on orthostatic intolerance didn't develop until the ME kicked in.

    But Gijs is right - there does seem to be a bit of a story around autoantibodies and orthostatic intolerance.

    BTW - the frequency of hypermobility in ME/CFS patients isn't pinned down all that well I think. Some people very knowledgeable about ME actually dispute that it is more common in People With ME. Do you have a percentage for how many of your trial participants are hypermobile vs the general population?

    Checking how many have orthostatic intolerance wouldn't take long and could be very interesting. Chris O'Callaghan might be an useful person to chat to given you are in Melbourne too I think. (Not that I agree with all that he says - he thought ME is really just orthostatic intolerance and the answer is GET when I last saw him. But he may be open to new ideas.)
     
    merylg, Mij, Vasha and 2 others like this.
  13. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,283
    I see Chris has likely found a subset. Which is great we need this so despartely and a biomarker for this subset.

    As for ME/POTS Group only 1 of 5 types of POTS has been linked to Muscarinic receptor antibodies. Many hear have shown Hypovolemic POTS, Hypadrenergic POTS, NMH...so what subset are they?

    Many even in Chris's cohort or one that presents with issues with glycolysis and citric acid cycle issues will have dyautonomic issues.

    The problem I see is a lack of subsetting in regards to this and why many studies focus on small groups of induviduals with similar symptom clusters.

    Ill give you a few examples Pattersons subtype that respond to Ampligen is 1 in 7 patients.

    Another subset Parvovirus B19 Active Responds too IVIG.

    Lerner Subset. Responds to Valcyte, valcyclovir and Vistide/Cidofir

    Chia Subset - Equilibrant, Interferon, IVIG

    Their is clearly a gut subset...absorption, Mito, etc.
     
  14. JaimeS

    JaimeS Senior Member

    Messages:
    3,245
    Likes:
    11,983
    Silicon Valley, CA
    I've definitely always been hypermobile. I think there's an association between this illness and connective tissue disorders in the form of increased incidence, but I'm not sure there's as direct a cause-and-effect as all that.

    My mother and sister both have this illness, and neither are hypermobile.

    :eek::nervous:

    That's how low it's *supposed* to go in the ITT. That's... like, 'have some glucose tabs handy' hypoglycemia right there...

    -J
     
    Justin30 likes this.
  15. Gijs

    Gijs Senior Member

    Messages:
    652
    Likes:
    1,332
    I know many many patiënts who aren't hypermobile at all, so i don't think it has anything to do with ME or POTS, maybe it is another subgroup too?
     
    halcyon likes this.
  16. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,283
    Several have Ehler Danios Syndrome 1 of 6 subtypes. It is a connective tissue disorder and has been linked to ME/CFS.

    ME/CFS has many comorbidities.

    Many get Cancer at higher rates, autoimmune diseases and Dyautonomia whether POTS or NMH.
     
  17. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,283
    This iswhy we desperately need a center of Excellence with a Global group of specialists from all aspects neuro, endo, immune, gastro, cardio, etc.

    The need to be smart and diligent and not skimp on testing so that disease subsets or stages can be defined clearly.

    I started a thread to get input from the community on symptoms onset, etc.

    Here is the thread:

    http://forums.phoenixrising.me/inde...-your-symptoms-and-cluster.45033/#post-732551

    It woulbe be great for as many people to engage if they have the energy.
     
    Last edited: Jun 7, 2016
    rosie26, A.B. and Bob like this.
  18. MEMum

    MEMum Senior Member

    Messages:
    435
    Likes:
    2,229
    Hi @Jaimie

    Really like the blog, but haven't worked out how to reply on there.
    Ron Davis was saying at lunchtime on Friday that at one stage Whitney was finding improved energy from amino acid powder (tastes revolting apparently).
    Sadly he can now only be fed via PICC line.
     
  19. MEMum

    MEMum Senior Member

    Messages:
    435
    Likes:
    2,229
    Haven't read the whole post. yet, but do know that when ketogenic diets are recommended for difficult to control epilepsy, medium chain fatty acids/triglycerides are recommended as being easier to digest/utilise especially for children.
     
  20. ChrisArmstrong

    ChrisArmstrong

    Messages:
    67
    Likes:
    638
    Many of the patients had POTS but I thought you asked if they had "persistent" Tachycardia, as in a constantly rapid heartbeat even when laying down.

    POTS is actually linked also as the tensile strength of the blood vessels requires collagen. I think POTS is common to all illnesses with collagen issues.
     

See more popular forum discussions.

Share This Page