1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
Discuss the article on the Forums.

CFS,mitochondrial diease, autism

Discussion in 'Other Health News and Research' started by Frickly, Jan 26, 2010.

  1. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
  2. Gerwyn

    Gerwyn Guest

    thanks Rich I read your hypothesis there also-I just did,nt know that it was yours My regime is iv b12,mg subcutaneous D Ribose NAD Coenzyme Q Acetyl carnatine clonezepam She wanted me to up the dose but I,m frightened and lamotragine as i developed frontal lobe seisures etc

    I have been digging and using my virology of my "old life" and thought about gene silencing. Prostate cancer cells infected with XMRV are silent for glutathione S transferase Alpha which will obviously profoundly affect glutathiones ability to do its normal job.Gene silencing appears to be a very ancient defence against gammaretros.A virus able to use this defence to silence a gene, ultimately responsible for inhibiting its replication, would be such a wonderful and ironic adaptation!

    Even if XMRV is a simple virus and doesn,t code for the peroxidase it could affect glutathione activity in this manner----simple but clever--reduces its energetic costs etc
  3. Marco

    Marco Old blackguard

    Messages:
    1,136
    Likes:
    736
    Near Cognac, France

    I'm a bit late joining this discussion but the only improvements I've found over the years have been from supplementing with Barley Grass and Essiac Tea. The barley grass seemed to give me more energy and I was breathing a little easier. The Essiac tea made me feel better generally for a period of about three months but then the effects lessened. Claims made for Essiac are that it is anti cancer, anti-viral and a detox agent - all of which are relevant. I gave them both up due to cost - but I'm tempted to start brewing my own Essiac rather than buy ready prepared.

    It could of course all be snake oil - but both seem fairly safe supplements and I even noticed my grey hairs turning dark again while using them. Not that I'm that vain (honestly) but I always feel that external signs are a good indicator of internal health.
  4. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    My sleep specialist is a neurologist at Mass General Hospital in Boston. It's one of the best neurology services in the country. I saw him two wks. ago and told him again how severe my PEM is and how I can feel when it will happen by my muscle sensation. He asked me if I'd had a muscle biopsy and if I'd be willing and brought up mitochondrial disease. There is a specialist he works with who he'd like me to see but unfortunately she had a very bad accident Christmas. He said he's learning a lot from her and when there is no explanation for severe P.E.M. to look for mitochondrial disease. However, what troubled him about this diagnosis is that I have two and possibly three autoimmune diseases. He gave me some copies of journal articles for the PCP on mito disease. He told me it was highly treatable but to be honest, when I read the articles, I started shaking. It didn't sound like there was a really successful treatment. If the doc he really wanted me to see doesn't return, I suspect there will be someone to take her place. He did think the muscle biopsy was the only way to diagnose and I could hear his brain working as to how to achieve it. He said the patient he worked with (a child with seizures whose parents brought her from Mexico was already hospitalized. He was called in because he's a seizure expert and speaks fluent Spanish.) I've known this doc for eleven yrs and we have a wonderful relationship. I bring him chocolate chip cookies and we talk about everything (except curing me.) I usually have a three day crach afterwards but I figure the lengthy visits are important if it makes him want to help me more. I know other patients and I thought they all had two hr visits; they don't. He is not a mito expert, but he is a really brilliant guy. I've had forty five yrs of chronic illness (not CFS) and you learn. I was tested for carnitine and zinc yrs ago when I was in a fatty acid study and was O.K. then, but that was a long time ago. I see a new CFS doc tomorrow (actually one I saw fifteen yrs ago who returned to the area and will discuss it with him.
  5. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Hi Andreamarie:

    What was the name of the woman mito doctor who had an accident??? There are supplements that help with mito (such as CoQ10) and there is a ton of mito research happening, we are just around the corner from having a blood test (& then muscle biopsies won't be necessary any more). So hang in there. If you do decide you can't wait and want to go the muscle biopsy route, pick your mito doctor really carefully and the surgeon as well. My muscle biopsy was easy, but if it's not done beautifully it can be a really difficult process. There is a good mito doctor at Tufts NE Floating Hospital (Dr. Korson). Dr. Sims used to do mito & I don't know if she still does. Contact the UMDF (united mito diseases foundation) for a list of docs and then visit some of the mitochondrial forums and ask people for their experience with particular mito docs and muscle biopsies before you proceed. AND ask the mito doc first how soon the blood testing will be available. Actually, you could also call Dr. Sim's office at Mass General and ask if there mito clinic is still looking for volunteers.....that might get you into one of their protcols. Good luck! ~FR
  6. dannybex

    dannybex Senior Member

    Messages:
    2,135
    Likes:
    497
    Seattle
    Just wanted to bump this great, informative thread...

    (was in deep crash mode from Jan-March...so must've missed this.)

    Thanks again to Fern for starting it...and for all the great contributions from all...
  7. Rosemary

    Rosemary Senior Member

    Messages:
    193
    Likes:
    0
    Hi dannybex......Thanks for bumping this thread up again
    It would be good to get an update about the results of the AUTISM-MITOCHONDRIAL STUDY using L-carnitine supplementation [information posted below]
    ... Does anyone please have any further information/feedback about this study ?

    AUTISM-MITOCHONDRIAL STUDY: PARTICIPANTS NEEDED
    PRESS RELEASE CONTACT:
    For Immediate Release
    Genetic Consultants of Dallas
    [Dir. Janet Kern, PhD, RN (Allen,
    January 6, 2009 TX 75013) Tel.: 214-592-6600]

    DALLAS, TX - ASD Centers, LLC has started a clinical study in the Dallas, Texas area.

    This study is designed to examine how L-carnitine supplementation
    affects behavior, cognition, muscle strength, and health/physical traits in those with a diagnosed autism spectrum disorder (ASD).

    This study has already enrolled multiple participants and space is limited.

    Study Background

    L-carnitine is a naturally occurring amino acid required in energy metabolism. Carnitine is essential for the utilization of fatty acids to produce the energy needed to sustain cell function.

    Carnitine deficiency is commonly found in children who have a diagnosis in the autism spectrum.

    Mitochondrial dysfunction is also often found in those diagnosed with autism. And carnitine has been used to treat mitochondrial dysfunction.

    Design of This Study

    Participants: Thirty children 3-10 years of age, who have a diagnosis of autism, PDD-NOS, or other ASD or pervasive developmental disorder. Also, they cannot have had previous chelation therapy using DMSA or DMPS, and/or carnitine-based therapy,or methionine or lysine supplementation.

    Study: Two-thirds of the children that participate in the study will receive treatment and one-third will receive a placebo. The study period is 3 months. Blood work and muscle strength testing will be done before and after treatment. There will be no costs to the participants.

    For more information or if you would like to participate, please contact Dr. Janet Kern at: 214-592-6600 or jkern@dfwair.net,
    Janet Kern, PhD,
    RN, Genetic Consultants of Dallas: 408 N. Allen Dr.,
    Allen, Texas 75013-2500.

    The Autism Research Institute (ARI) and CoMeD are supporting this study.

    Your generous tax-free donations to ARI [1] or CoMeD [2] will help to fund additional research, similar to the present study, to establish appropriate curative therapies.
    ___________ _________ _________ _________ _________ ___
    [1] To support the ongoing efforts of the ARI, with your tax-deductible contributions, please visit their website, http://www.autism.com
    [2] To support the ongoing efforts of CoMeD, Inc. with your tax-deductible contributions, please use the PayPal link on CoMeD's Internet website,
    http://www.Mercury-freeDrugs.org.CoMeD,Inc. is a not-for-profit 501(c)(3) corporation that is actively engaged in legal, educational and scientific efforts to stop all use of mercury in medicine, and to ban the use of all mercury-containing medicines as well as to establish proven curative or supportive therapies for those who have been harmed.


    Hopefully, most will find this Press Release to be
    informative.

    ************ ********* ********* ********* ****
    *The information provided in this email *
    *and any attachment thereto is just that *
    * -- information. *
    * *
    *It is not medical advice and it does not *
    *require any specific action or actions. *
    * *
    *While the information is thought to be *
    *accurate, no representation is made as *
    *to the accuracy of the information posted*
    *other than it is my best understanding of*
    *the facts on the date that this email and*
    *any attachments thereto are posted. *
    * *
    *Everyone should verify the accuracy of *
    *the information provided for themselves *
    *before acting on it. *
    ************ ********* ********* ********* ****

    Respectfully,

    Dr. King
    http://www.dr-king.com
  8. dannybex

    dannybex Senior Member

    Messages:
    2,135
    Likes:
    497
    Seattle
    I don't know about that study, but do know that l-carnitine DEFINITELY helps me. I notice a difference within 2-3 days of stopping it.

    Thanks for posting it Rosemary. :)
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,136
    Sth Australia
    i just read the OPs post but havent read the rest of the thread so i've no idea what has already been said.

    I've come across 2 or 3 people so far in another medical forum who have been given a diagnoses of mitochrondrial disease.. it has only been within the past few months so i think doctors must be catching onto this. What interested me is these people had symptoms just like me (just like us... they could of easily by diagnosed with canadian defination of CFS. They get annoyed if they are refered to as CFS patients or anything to do with us :p , thou we have mitochondrial disease i guess one could say too as mitochondrial dysfunction is found in CFS).

    I also remember reading a study last year?? of a CFS specialist who was offering mitrochondrial test for dysfunction and found nearly all of her CFS patients do have dysfunctions. One can tell between control groups and CFS patients by the mitochondrial tests. (there is some graphs somewhere on this and the study online)
  10. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, all.

    There's a lot of evidence for mito dysfunction in CFS. Perhaps some people with CFS also have genetic mito disease, but I think that is less prevalent.

    The study referred to was carried out by Dr. Sarah Myhill in Wales, using the mito testing offered by John McLaren Howard of Acumen Lab in the UK.

    In my hypothesis, the problems with the mitos in CFS start with glutathione depletion, and that leads to all the other things that Dr. Howard observes in the mitos of people with CFS.

    The glutathione depletin, in my hypothesis, also leads to a partial block in the methylation cycle, and two of the consequences of the low resulting methylation capacity are low production of carnitine and coenzyme Q-10, both of which require methylation, and both of which are needed by the mitochondria. So the mitos suffer in a lot of ways in CFS, and it is therefore not too surprising that there is an energy problem in CFS, since the mitos are responsible for generating most of the ATP, which powers the muscles, the nerves, and a host of other biochemical functions in the body.

    In my opinion, CFS and autism are essentially the same disorder from the biochemical standpoint, though they have differences in symptoms and epidemiology, because of the different ages at onset. Pretty much whatever works for autism works for CFS, too.

    Best regards,

    Rich
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,136
    Sth Australia
    Thanks Rich
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,136
    Sth Australia
    I just read this whole thread trying to make sense of my own case but are still none the wiser.

    If this is what causes both CFS and also autism and if the age you get the problem happening is responsible for which one you develop. Can one double get a dysfunction?? but if one has it hasnt one got it..so cant get it again? I cant figure out why in my case I've developed both (I've got Canadian consensus defined CFS as well as mild autism/Asperger's).

    on the other hand if you can get both of these as they are caused by same issue.. why dont i come across many who have CFS on the autism forums?? One would then expect to come across lots.

    Im trying to get my head around this but are struggling to do so.

    any ideas?
  13. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Autism and CFS simultaneously


    Hi, tania.

    At what age did you develop autism (or Asperger's)?

    It makes sense to me that a person who develops autism as a child will exhibit symptoms associated with CFS as an adult as well.

    When a child has autism, in addition to the characteristic brain-related symptoms of autism, they also have many of the features of CFS: immune dysfunction, oxidative stress, buildup of toxins, intestinal dysfunction and others. The child may also have chronic fatigue, but may express it differently from an adult.

    If a child develops CFS at a very young age, it is difficult to determine all their symptoms, because they are unable to speak, and because even if they could speak, they do not have experience as a healthy person with which to compare their current status. As far as they know, the symptoms they have are just normal, because they haven't known any other status.

    I would agree that once you have this condition, you have it, and you don't develop it twice (though there are people who recover from CFS and then later relapse again).

    As to why there are not people with CFS in the autism groups, I would draw your attention to Dr. Amy Yasko's autism forum at www.ch3nutrigenomics.com There is a section on this forum for Parents and Adults, and people with CFS post there. There are people with CFS who are using the Yasko treatment, and there is a Yahoo group called CFS_Yasko that is devoted specifically to this.

    At the end of this month in Boston there will be a conference called the Yasko Protocol Conference. I have been invited to speak there on the application of the Yasko treatment, which had been applied primarily in autism, to CFS. Information on the conference is available at www.holisticheal.com

    The biochemical connection between CFS and autism was developed only since late 2004, and it is not yet widely known. More information about this connection can be found at www.cfsresearch.org by clicking on CFS/M.E. and then on my name.

    I hope this is helpful.

    Best regards,

    Rich
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,136
    Sth Australia
    They say that ones with Autism have had it all their life.. so one would think ive always had it?? Looking back i know for sure, due to my behaviour i had it before i was 8 yrs old (i was doing very Asperger's things when i was in grade one or two in junior primary school). My memory doesnt go back further than that. (Ive been told I had a stuttering issue when i was 4 yrs old, I dont know if that was related to it or not).

    At my 8th birthday party... in a bid to make friends, i poured my drink all over the floor in front of everyone. I thought (cause of movies, wasnt the heros always well liked and brave) that people liked people who were "brave".. and as i knew i'd get into trouble for doing that, i thought it was a brave thing to do and would make me friends. Of cause this act to make friends backfired.. and none of the kids would then talk to me. (i really had not a clue how to make friends!!, I still dont find my childhood incidents funny.. still upsetting).

    Autism all my life??? then I got severe mono when i was about 12/13 years old.. and then got CFS/ME at about 26 yrs old. There was two incidents in my childhood (before the mono) in which my energy reserves packed up after exercise.. leaving me unable to walk (but they only lasted a couple of hours).. but from that i think there was something there, predisposing me to CFS/ME

    Im unsure what to make of that thought. Ones with autism suffer from a lot of tiredness and exhaustion due to the struggle to deal with daily life.... but it is very very different from CFS exhaustion. Interestly i can actually tell when im tired due to my autism and my struggles in my daily life with that and when it is due to the CFS instead (feels different, Austim exhaustion is a healthy exhaustion or tiredness.. the CFS one feels very unhealthy). Ones with Autism can also suffer from "overload" symptoms but i find them different to my CFS ones... they can also suffer from MCS, but interestly i didnt get MCS till after 10 years of dealing with CFS (at around 35 yrs old). I never had bowel issues as a child but developed IBS with the CFS. I NEVER got sick as a child till i got the glandular fever.. I dont think i missed even one day off of primary school with sickness.

    I did not have CFS as a child, i was an extremely healthy, very energetic child. I was into a heap of sports, I loved sports (alone type of sports of cause being Aspie... eg long distance running, swimming, horseriding)

    My autism just shows in the different way my mind works, not neurotypical... (my obsessive interests etc etc) rather than with my health. (ahh and also sudden emotional blowouts from bottling up emotions). CFS for me affects my hormones, me neurologically and in other areas too.
    Im very aware of what it was like to have just Autism and grow up with that.. but then to get CFS (when an adult). Definately distinct feeling things and one should never confuse the fatigue of one illness, with a competely different one. (they feel like chalk and cheese to me).
    nods.. i got it again after i recovered.. i had a 2-3 year remission. (mine has followed the same kind of pattern Dr Cheney talks about)

    they must be a very small group in general, i hang out in the "wrong planet" autism forums which are huge.. only come across one with actual CFS. I also wonder what defination of CFS they are. I really dont believe in any except the canadian consenus one.. not Reeves idopathic fatigue or that silly CDC defination. Thanks for telling me about that group. :) .. i'll probably check it out some time.

    i really arent fitting your theory are i... (i also dont fit the CFS theory that CFS is passed on throu the mothers mitochrondial DNA.. as i've got it from my fathers side of the family, the side the autism also comes from. :p So you do get a link there).

    thanks for the post and thoughts
  15. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, tania.

    Thank you for the information. I think your case is fascinating! You are the first person I have been able to communicate with who has both Asperger's and CFS. I really appreciate reading of your experience and receiving your insights.

    You're right, you don't fit the hypothesis I proposed. So here's another one:

    I suggest that you inherited a set of genetic polymorphisms that made you vulnerable to developing glutathione depletion and a partial methylation cycle block, but that you did not have these biochemical abnormalities when you were born. You only had the tendency to develop them, if subjected to appropriate external factors.

    I suggest that you developed glutathione depletion and a partial methylation cycle block sometime between your birth and when you were 8 years old. If it had been very early, I think you would have had fullblown autism. I suggest that your brain had been able to develop normally initially, so that you avoided developing frank autism. However you did develop glutathione depletion and partial methylation cycle block in early childhood, before your brain had been able to fully develop, and that's why you have Asperger's.

    I don't know what caused the onset of these abnormalities at that point. It could have been any of a variety of factors that could be called "stressors." They could have been physical, chemical, biological or psychological/emotional, or some combination of them.

    Then, I suggest that after developing Asperger's, you recovered from the glutathione depletion and partial methylation cycle block, for the most part, so that you did not suffer from fatigue during your childhood and early adult years, except for a couple of episodes when you "crashed." Anything that would have depleted your glutathione could have caused these crashes.

    Then, I suggest that you had a relapse of the glutathione depletion and partial methylation cycle block, and this produced CFS at about age 26. Again, some stressor or combination of them would have been involved in causing this relapse.

    Does this hypothesis match your experience more closely?

    Best regards,

    Rich
  16. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    taniaaust1

    I am sorry for butting into your conversation but just wanted to thank you for your contribution to this site. My 12 year old is diagnosed with aspergers and I am so impressed with your ability to "look inward." Sorry...can't think right now about how else to say this. I really hope for the day when my son will develope the kind of self awareness you seem to have :). I beleive we are stuck were we are until then. I am so sorry about your struggles growing up. I can relate to them, in a way...as I watch my son struggle with the same thing everyday. I talk with a friend often who also has a son on the spectrum. We often discuss how we beleieve many of our childrens behaviors are just because they are mimicking what they see on TV. They think this will help them to connect with others. It breaks my heart to see him try so hard to be apart of the group but continue to fail. Unfortunatley TV, even cartoons, are very inappropriate and do not work in real life.

    If you guys don't mind I will copy and paste this discussion with rich and email to a friend. She has a 6 year old boy on the spectrum. He is showing signs of ME/CFS. He has no energy and will just drop to the floor. He can't hold a door open or keep up with kids at school. She is a nurse and has had him on tons of supplements for mito support which are not helping. She beleives he may have CFS.

    Take care,
  17. Mya Symons

    Mya Symons Mya Symons

    Messages:
    827
    Likes:
    165
    Wyoming
    Before I joined this group and before I realized it was important to save articles with new info. regarding CFS/ME and FMS, I found an article about damaged mitochondria in Fibromyalgia. There was a Spanish doctor who found that people with FMS have cells that won't absorb CoQ10. There was a lot of it floating around in the blood stream, but for some reason the cells did not pick it up. He stated that if CoQ10 is not picked up there is a chemical in the cells that will not be neutralized and, thus, will damage and kill the mitochondria. He did some tests and found that if you absorb co-enzyme Q10 in Vitamin E and Fish Oil, the body's cells will actually pick it up and neutralize the chemical that damages the mitochondria. However, if you take a powdered form of Co-Q10, the cells still won't pick it up. Maybe someone who is better with the internet could find this article.

    This is a little unrelated--I am wondering if anyone knows where I could get slow release L-Carnatine. L-Carnitine makes me very nauseous, but it works for added energy.
  18. Rosemary

    Rosemary Senior Member

    Messages:
    193
    Likes:
    0
    Hi Rich Thank you so much for sharing this information,

    I'm trying to understand how HIV depletes carnitine ?

    you said quote "The glutathione depletin, in my hypothesis, also leads to a partial block in the methylation cycle, and two of the consequences of the low resulting methylation capacity are low production of carnitine and coenzyme Q-10, both of which require methylation, and both of which are needed by the mitochondria."

    Glutathione is a common deficiency with HIV therefore could the partial methylation cycle block/low methylation also explain how HIV depletes carnitine ?

    Many Thanks
    Rosemary

  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,136
    Sth Australia
    I cant find the one you are after.. only this one http://www.ncbi.nlm.nih.gov/pubmed/19133251
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,136
    Sth Australia
    sorry I just remembered something.. it appears i did have it when a baby... I forgot what my mum had told me that i was unusual as a baby. She said i was amazingly good baby as she could just sit me in front of the tv and unlike all my 3 siblings (born after me) i just then wouldnt move all day, i'd be completely fixated on the TV!!. (this was before i was able to walk.. when a baby). So it appears by that, i must of had Asperger's even when a baby.

    True.. i guess you understand completely how MTHFR polymorphism plays into glutathionine depletion. (my CFS specialist has sent me some great diagrams of the biochemisty of all that .. how the remethylation pathway runs into the transulphuration pathway all the way down to glutathione and where my polymorphism fits on all this, I tried to cut and paste it all here but it wont do that from my email).

    It must of have had so severely depleted my folate levels that i had a child who was born with severe birth defects, caudal regression syndrome (similar to spina bifida) (i didnt have diabetes in pregnancy so her case was caused by the lack of folate due to the polymorphism). I had her when i was 19 yrs old. ...............

    i only wonder why my methylation blocks if that is what it is.. are going on and off on and off. One would think the mono would of triggered off CFS seeing i had a block. i so wonder why not (if anything was going to trigger, one would think it would be mono).


    Does stress and lack of sleep deplete glutathionine enough that it would make CFS come right back?
    When ive got it again after remission as well as when i very first got it... it was both severe stress related as the very first initial trigger (after that anything esp physical doing things would trigger).

See more popular forum discussions.

Share This Page