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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 7, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...

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    Dutch group ME/cvs Vereniging present their latest video followed by a chat session with Dr Charles Shepherd from the UK ME Association

    ME/cvs Vereniging launched a series of broadcasts from expert clinicians and researchers in January 2013, as part of a government subsidized project called, “Science to Patients”.

    Each expert has also taken part in Q & A sessions, enabling patients to ask questions on both theoretical and practical aspects of ME/CFS.

    The sessions were not meant to be a consultation, but have proven to be a mine of knowledge to many a patient about his/her own condition.

    These are all English subtitled broadcasts and have previously featured Dr Kenny De Meirlier, as well as the Dutch cardiologist, Dr Frans Visser.

    Dutch international project: Science to Patients

    This current year kicked off with a series of interviews from paediatrician Dr Nigel Speight, Medical Adviser to the 25% ME Group for severely affected patients and Honorary Paediatric Medical Adviser to the ME Association, who spoke in some detail about how the condition affects children.

    Announcing the latest broadcast: Dr. Charles Shepherd on ME, Exercise and the Mitochondria

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    Dr Charles Shepherd.
    Click Image to Watch Latest Video

    Dr Charles Shepherd MB BS, is Honorary Medical Adviser of the ME Association, and a private physician with a longstanding personal interest in ME/CFS - having developed the condition following an episode of chickenpox encephalitis that he caught from one of his hospital patients.

    He has been involved with all aspects of the illness - benefits, education, management, media, politics, research, services - for over 30 years and was a member of the Chief Medical Officer's Working Group on ME/CFS and the Medical Research Council's Expert Group on ME/CFS research.

    He is currently a member of the Department of Work and Pensions Fluctuating Conditions Group, whose recommendations regarding changes to the way eligibility for work-related sickness benefits (ie ESA) are assessed has recently been tested in an evidence based review.

    Dr Shepherd is also involved with parliamentary work - including forming part of Secretariat for the All Party Parliamentary Group on ME at Westminster.

    His research involvement includes supervising all the research that is currently being funded by the ME Association - in particular the establishment of an ME Biobank for blood samples at the Royal Free Hospital in London - and he is an executive board member of the UK ME/CFS Research Collaborative.

    “...so we know there seems to be a problem with mitochondrial function in ME and this may play a very important part in explaining why people have this very characteristic symptom of exercise-induced muscle fatigue and sometimes pain in this illness.”

    Research interests include the role of vaccines as trigger factors for ME/CFS, post-mortem tissue collection and analysis, and muscle/mitochondrial abnormalities in ME/CFS.

    He has written a self-help guide for people with ME/CFS ('Living with ME') and a 52-page guideline for health professionals ('ME/CFS/PVFS: An Exploration of the Key Clinical Issues'), written with Consultant Neurologist, Dr Abhijit Chaudhuri; as well as having made numerous contributions to the medical literature.

    Dr Shepherd is married with three children and lives in Gloucestershire.

    The video broadcast - available to watch now - will be followed by a Q & A session in English, on Thursday 10 April, from 17:00-17:45 Central European Time. Please visit HERE on the day to watch, or to take part.

    Please be advised that further interviews will be broadcast and chat sessions held over the summer and autumn with Professor Julia Newton and Professor Lenny Jason.


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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  2. Firestormm

    Firestormm Senior Member

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  3. Legendrew

    Legendrew Content team

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    Great article and a very interesting video, a lot of people are very critical of Dr. Shepherd for one reason or another but it has to be said his commitment to ME/CFS is very admirable, as is his willingness to aid research and exposure of the condition where he can.

    I'm very interested in the mitochondrial problems that may arise in relation to ME/CFS. From a personal perspective, following my sudden onset, PEM was never a major issue earlier in my disease however as time has progressed it appears to play a larger role where other symptoms and problems have diminished. It makes me wonder whether mitochondrial problems may arise later as a result of something else. My mind immediately turns to recent studies displaying vascular problems in ME/CFS patients, particularly endothelial dysfunction, a problem very closely related to autonomic dysfunction which appears to have quite an important role in the pathophysiology of ME.

    To me the build up of lactate, alongside evidence of damaged mitochondria, imply an insufficient blood supply is reaching the muscle cells. This would mean waste products would build up quickly as their production will vastly outpace the removal which normally takes place via the blood stream. A build up of lactate is well documented to cause cellular damage, I think this would be best termed a type of ischemia which is well known to cause mitochondrial damage alongside a plethora of other problems for cells.

    While I don't think mitochondrial abnormalities are therefore the primary disease driving force for ME/CFS, I do believe that they are the cause of one of its most discerning feature - post exercise malaise.
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  4. charles shepherd

    charles shepherd

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    You make a very valid point about the role of blood flow to skeletal muscle - because this could link in with the autonomic nervous system, which helps to control blood flow, and ANS dysfunction is a well recognised feature of ME/CFS.

    The MEA Ramsay Research Fund has been funding more research at the University of Newcastle (Prof Julia Newton et al) into abnormal muscle energy metabolism in ME/CFS and the possible underlying pathophysiology behind the abnormalitity involving lactic acid production.

    I would refer you in particular to the findings from Newcastle that have been reported in this paper:
    Last edited: Apr 7, 2014
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  5. NK17

    NK17 Senior Member

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    Dr. Sheperd I'd like to ask you what kind of lab tests can be run to diagnose these specific abnormalities in ME patients?
    Would a neurologist specialized in neuromuscular disorders be the right doctor?
    Thank you in advance for taking your time to answer.
  6. charles shepherd

    charles shepherd

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    The main hospital based investigation that we have been using here in the UK to assess muscle bioenergetics (= how muscles are dynamically producing energy and lactic acid at a biochemical level) is magnetic resonance spectroscopy (MRS)

    The test we have used to look at anatomical structure is a muscle biopsy (= removal of a small sample of muscle) followed by electron microscopy to look at the mitochondria (= organelles within muscle where energy production takes place). This research (including a piece of my own leg muscle - and I still have a large scar to prove it!) was carried out and published by my colleague, Professor Mina Behan from Glasgow.

    But these are really research based tools as far as ME/CFS is concerned at present.

    So they would not normally be arranged in a clinical assessment setting unless another explanation - eg a primary disorder of muscle/mitochondria - was being queried

    There are number of commercial tests for mitochondrial function available - but they have not been properly validated. They are not therefore used in a research setting or in the NHS.

    A very simple screening test for muscle damage is a blood test for creatine kinase - an enzyme than can go into the blood when muscle is damaged. This test should form part of the initial laboratory assessment, and would usually be normal in ME/CFS. So it is is of limited value.

    There are specialists in muscle disease - both clinical and research. But their numbers are very small. So people with suspected muscle disease are often assessed by neurologists in the first place - certainly here in the UK.
    beaker, MeSci, Sushi and 3 others like this.
  7. Thomas

    Thomas

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    Dear Dr. Shepherd,

    Thank you for your video. I have been following your work since my onset 2.5 years ago when I was 32 years old. The article above mentions research being conducted to investigate the role of vaccines as a trigger of ME. My illness occurred suddenly 10 days after a flu vaccine. In your experience, do flu vaccine patients have a different disease process or prognosis from others?

    I understand from your work that the Hepatitis B vaccine can cause a much more severe case of ME, but my interest is in post flu vaccine ME.

    I am curious as to your comments.

    Cheers,

    Thomas
  8. lnester7

    lnester7 Seven

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    @charles shepherd I would like to ask, I had a excercise test done, My anaerobic tresh hold (AT) is 115bpm. I feel much better by Pacing but my AT is still 115bpm. I have tried gradual excercise with no much improvement (keep crashing no matter how gentle I do it). Is there a way to fix the AT once it has gone down .
  9. charles shepherd

    charles shepherd

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    Anecdotal evidence indicates that a number of vaccinations, including flu vaccine, are capable of either triggering ME/CFS, or causing an exacerbation of pre-existing symptoms

    But there hasn't been any really robust research carried out to investigate the role of this other type of immune system stressor in ME/CFS

    I have a research interest in the role of vaccinations and my patient data on the subject, which is now quite substantial and includes a lot of health workers who are vaccinated almost as a condition of employment, indicates that hepatitis B vaccine plays an unusual and significant role here

    This is supported by the resultrs of the MEA website poll on the roll of vaccinations as trigger factors for ME/CFS:

    MEA WEBSITE POLL:



    • If your ME/CFS was triggered by a vaccination, which vaccine was involved?
      • Hepatitis B (57%, 338 Votes)

      • Flu (9%, 51 Votes)

      • Other (7%, 41 Votes)

      • BCG (6%, 33 Votes)

      • Cannot remember (5%, 31 Votes)

      • Combination (5%, 27 Votes)

      • Tetanus (3%, 18 Votes)

      • Meningitis (3%, 17 Votes)

      • MMR (2%, 14 Votes)

      • Polio (2%, 10 Votes)

      • Hepatitis A (1%, 7 Votes)

      • Typhoid (0%, 4 Votes)


        Total Voters: 591
    Start Date: April 30, 2010 @ 3:20 pm
    End Date: June 2, 2010 @ 3:20 pm
  10. charles shepherd

    charles shepherd

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    It's very difficult to try and give individual practical advice on activity management and pacing over the internet without knowing the person you are dealing with. So this is something that you really need to discuss with whoever is supervising your activity programme - ? physio ?doctor - which I assume is based on the protocol from Prof Mark VanNess et al. I attended an excellent physicians workshop that was organised by this group at the IACFS/ME conference in Francisco a couple of weeks ago and am just finishing off a very detailed report (7000 words) which should be up on our MEA website fairly shortly. You may find that this general info helps to answer your question as well.
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  11. Mij

    Mij Senior Member

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    I had a sudden viral onset but was vaccinated the next month for a course/work. . I had a Rubella, Tetanus and x2 Hep B shots, I was too sick by time the 3rd one came around, so I decided not to have it. I think I might have recovered from the viral infection but the vaccines put a stressor on my immune system. That was 23yrs ago.
  12. Thomas

    Thomas

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    Thank you very much for that helpful information. I am assuming the lack of data in this field therefore reflects a lack of data on prognosis for flu shot induced ME as well. I guess I will just have to see how this disease plays out with me. Thank you again.
  13. charles shepherd

    charles shepherd

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    I have a number of cases where people have been having a course of vaccinations (hepatitis B in particular) and this has co-incided in a progressive deterioration of health, eventually being diagnosed as ME/CFS. I wish doctors would take more note of patients who say they are unwell following a vaccination - instead of just simply reassuring them that there is nothing to worry about, serious side effects are rare, and carrying on with the course regardless.
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  14. charles shepherd

    charles shepherd

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    Sorry - my reply should have been here - it is on a new entry
  15. peggy-sue

    peggy-sue

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    My gp refused me an exercise test. I asked for one so that I could prove to him my body isn't working properly.
    He thinks it's all just in my head and has tried to flannel me about dualism/mind-body garbage. I have been "treated" with nothing but contempt.
    He told me the equipment is a.) too expensive and b.) not available to me.

    I know the equipment is sitting, mostly unused, in the university physiology department.
    The metabolic test on a bike is a second year life sciences practical class. I did it.

    @charles shepherd
    Are there any tests at all in the uk, which one can get if one has ME, which would help to pin down any problems or deficiencies we have, so that we can deal with them?


    for example
    I know I have problems with B12. I started taking it, (sublingual form, without knowing whether I needed it or not).
    It helped hugely within 30 minutes. If I ever stop, a load of troubles arise.

    It's been nothing but a matter of trial and error - and a lot of expensive errors - which has also meant loosing my functioning for extended periods of time.

    I've been sick for over 10 years now. I don't even have a diagnosis yet.
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  16. charles shepherd

    charles shepherd

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  17. charles shepherd

    charles shepherd

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    The repeat cardiopulmonary exercise test developed by Prof Mark VanNess et al cannot yet be described as a diagnostic test for ME/CFS but it does produce sound objective evidence of post-exertional malaise, which is a very characteristic clinical feature of ME/CFS. It is not highly expensive to do if the equipment is available. I suggest you take abstracts (readily available via google) from the two most recent papers from this group that have been published and show them to your GP.

    There are certainly anecdotal reports of people benefitting from vitamin B12 injections but no sound evidence in the literature of B12 deficiency in ME/CFS or proven benefits from B12 injections in properly controlled clinical trials. So most UK doctors are reluctant to prescribe this vitamin. In addition, vitamin B12 is not a form of treatment endorsed by NICE.
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  18. Valentijn

    Valentijn Activity Level: 3

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  19. peggy-sue

    peggy-sue

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    All I know is that I have evidence that sublingual B12 works for me.
    It made the pain-in-the-brain that comes from trying to attend to something vanish.
    I had had that pain for 3 years. B12 cured it in 30 minutes. And kept it away for 7 years.

    When I inadvertently stopped it, my brain descended into that painful fog again, my tongue went black and hairy, I got oral thrush and sores in my mouth which wouldn't heal. My dentist had mentioned vitamins, so I started the B12 again immediately - I started improving immediately.
    It's not dangerous to supplement with a little B12. I did check that.

    I don't give a monkey's what NICE says, or that studies haven't been "properly carried out yet" on whether B12 helps or not. It makes a huge difference to me.
    I really hate to think that hundreds of other folk who might get some help from it aren't, because of the very nasty NICE.

    NICE don't know what they are talking about OR dealing with.
    They don't know what it is they are even claiming to study.
    What they DO recommend is dangerous for PWME.
    If NICE said "the sky is blue", I would check it out for myself.



    My gp DID do some tests for deficiencies shortly after I'd been at the dentist. The black hairy tongue seemed to spur him into some sort of action. Told me I need to supplement with folate, but my B12 was ok.
    (hardly surprising - I'd just taken a dose!)


    I was not asking for a diagnostic test, I know there isn't an official one yet.



    When I went without my B12, I developed a load of B12 deficiency symptoms, and I did get some proper tests done.

    What I am asking now, is,
    are there any other tests which would be relevant to my ME, that I might be able to get, now my gp has finally got hold of the notion that there is something weird going on? (ie. tests I might get under the ageis of black hairy tongue and sores which won't heal, not under the ageis of NICE's "too lazy to get fit again". )


    He even started blethering about gluten intolerance!


    (the Canadian Criteria fit me down to the ground. I can use them, even a bit foggy, so I don't understand why they're "too complicated" for gps to use.)


    I imagine I really need methyl folate, because my diet should not be deficient in either B12 or folate, the problem is my body can't absorb or deal with it properly.

    So, I know there are tests he could do which would help me, but he is just refusing because of his disturbed beliefs about ME. I'm in Scotland, so the NICE guidelines don't really count for much - except as an excuse to do nothing to help.
    He's not interested in anything I give him.
    I did once mention doxycycline - he smirked and said I couldn't have it even if he was willing to prescribe it, which he wasn't, because I'm allergic.

    He did ask me to email him a copy of the Scottish Good Practice Guidelines; he even gave me his "special" email address which wouldn't block me from contacting him.

    Which blocked me from contacting him.:bang-head:
    Valentijn likes this.
  20. AndyPandy

    AndyPandy Making the most of it

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    @charles shepherd
    My ME/CFS developed after a bad reaction to statins, which included severe muscle weakness. I am interested in the association between statins, mitochondrial damage and ME/CFS. Are you aware of any other cases or research on this?

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