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ME/CFS and Beating the Clock
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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. charles shepherd

    charles shepherd Senior Member

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  2. charles shepherd

    charles shepherd Senior Member

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    Yes - the NICE guideline states that doctors here in the UK should not be prescribing vitamin B12 supplements to people with ME/CFS. The guidelines state: Do not prescribe for symptoms: there is not enough evidence they are effective. It was interesting to note how many US doctors are willing to prescribe vitamin B12, and other supplements such as Co-Enzyme Q10, to their patients during a session where physicians discussed 'difficult cases' at the IACFS/ME conference in San Francisco.
     
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  3. charles shepherd

    charles shepherd Senior Member

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  4. charles shepherd

    charles shepherd Senior Member

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    I have a number of cases where statins have caused muscle damage in people with ME/CFS and have covered this in the MEA magazine: ME Essential. Muscle damage is a fairly uncommon, but well recognised side-effect associated with the use of statins. Our advice in the MEA clinical guidelines (i.e. MEA purple booklet) is that statins should be used with caution in people with ME/CFS.
     
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  5. charles shepherd

    charles shepherd Senior Member

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  6. charles shepherd

    charles shepherd Senior Member

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    We could send your GP (at no charge) a copy of the MEA purple booklet - which summarises and references all the key information on clinical assessment, investigation, diagnosis, research and management of people with ME/CFS. The section on routine blood tests, and other investigations, is divided into three sections: those that should always be checked before a diagnosis is made; those which should be ordered according to clinical judgement; and those which are not recommended in our current state of knowledge.
     
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  7. justy

    justy Senior Member

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    How do I get one sent to my GP?

    Thanks for taking the time to engage with patients here.

    I found that the 'illness' (M.E undiagnosed) that I was slowly recovering from was made worse after a series of injections when I started my degree in Midwifery in 1995 - which included the Hep B shot. I wasn't keen to have them, but was told I would not be accepted on the course if I did not. 10 months later I had to leave the course due to ill health. Slow recovery for me again then to 'only' mildly affected was sent spiralling down again in 2008 after measles followed by pneumonia. Still trying to crawl back up out if that, but now moderate with some severe symptoms at times.

    I also attempted a degree in public health in 2009 and I can agree wholeheartedly with the poster who said they know the equipment for exercise testing is sitting around in local universities - we did work on them, testing peoples thresholds within the first month - a shame that these facilities (perhaps using the students?) cant be used for PWME/CFS.

    Unfortunately a spiral down into severe ill health also scuppered that degree. Now on my third try, doing a degree through the OU at home, but this time not with a career in mind - just for something to give my life some meaning - although its a hard slog!

    All the best,
    Justy.
     
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  8. JKN

    JKN

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    Dear Dr. Shepherd,

    I have not had a chance to watch your video (I can't access from this computer) or read anything you've written on exercise and ME/CFS. However, I wanted to comment from my experience and hope to hear your response.

    I feel like a stranger in a strange land with all of this talk about the exercise testing. I took a cardiac stress test 9 years ago which caused very severe disease progression and heart damage. I am now in Stage 2 diastolic heart dysfunction with Stage 4 heart failure symptoms as a result of this stress test. I also lost my ability to talk. I had no heart problems or problems with my voice before the stress test. I recently had episodes of diastolic dysfunction progression (Sept. 2012, Jan. and Feb. 2014) and now I am almost entirely bed and wheelchair bound. I have no heart stamina, all movement is difficult, constant light headedness, sitting up, standing, and walking are extremely difficult. With minimal activity, my heart pumps out of my chest trying to find some blood to pump, and my heart rate increases from 70 bpm to 120 bpm, and take 4 hours of lying down to return to base line.

    "Findings which suggest mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy in CFS patients led CFS expert Professor Paul Cheney to comment. ‘The most important thing about exercise is not to have patients do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’ Numerous heart, lung, brain and other abnormalities also show strong evidence that exercise can have extremely harmful effects on CFS patients in many different bodily systems, permanent damage may be caused, as well as disease progression." (Williams 2004, [online]).

    "Not only is it inappropriate for CFS patients to undergo a treadmill stress test or be pushed toward age-predicted target heart rates, but this is potentially dangerous." Philipa Corning, Ph D, Vice President Quest 61, 2003

    Dr. Paul Cheney wrote (www.cheneyresearch.com), "We have a rising case load of diastolic dysfunction seen in 97% of our CFS cases (avg. age 49) and some appear to have what I would call compensated diastolic heart failure. I would define compensated DHF in CFS as an extremely low cardiac output with a cardiac index (CI) below 2.0 and very poor functional capacity combined with the inability to stand which is the corollary in DHF to the inability to lay down flat in systolic heart failure (SHF). Heart failure patients are typically below 2.0 in CI. I have several CFS patients below that number and they cannot stand still for more than 15-30 seconds without having to sit down or fall down. Walking or moving helps which makes sense as that would increase filling pressures and equivalent to laying down. They might be diagnosed as having orthostatic intolerance by others."

    "Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years."

    Before I took this stress test in 2005 I had a mild case of ME/CFS. After the stress test, I had a severe case of disease progression, lost my voice, and I believe caused severe damaged to the mitochondria in my heart, which has triggered progressive diastolic dysfunction (Stage 2) and I'm in the process progressing into diastolic heart failure.

    I believe the recent episodes of diastolic progression and severe disability were triggered by minimal activity that demanded more heart capacity than my heart could deliver. However, instead of experiencing post-exertional malaise it triggered progression in diastolic dysfunction. This is permanent progression with no recovery. I'm guessing that the minimal activity, like the stress test, is damaging what's left of my severly damaged mitochondria.

    The cardiologists I've seen say that I shouldn't be this disabled with Stage 2 diastolic dysfunction. However, based on other ME/CFS research by Dr. Bell, Dr.Streeten, and others, I'm assuming that I likely have ME/CFS related low blood volume. So my guess is that the combination of low blood volume and diastolic dystunction adds up to very low cardiac output and my severe disability, all caused by this stress test.

    So I am totally shocked by these exercise tests going on. Unless, I have a different disease, which I don't believe I do, or that there is a difference between ME and CFS, then I don't understand why PWCs taking these cardio tests aren't having the same horrific results that I've had. So I would warn all PWCs that taking a stress test could destroy your life and possibly lead to severe permanent disease progression, and death from heart faiure. Furthermore, I don't understand why there are no research studies going on today reg. the effects that ME/CFS has on the heart, i.e. this is one of the main causes of death from ME/CFS.

    I'm also wondering if my experience is unique or have others had this serious disease progression from aerobic exercise and/or taking a cardiac stress test? I don't see many ME/CFS specialists putting out any warnings to PWCs, and I'm seeing these exercise studies increasing. I'm also concerned with posts like the one above from Peggy-Sue who is biting at the bit to get a cardiac stress test, and is upset that her Dr. refused to give her one. His refusal may have been the luckiest day in her life.

    I would appreciate if you could respond to as many of the following questions you feel comfortable responding to, or have time to respond to:

    * Why you believe this cardiac stress test caused severe ME/CFS disease progression?

    * What did the stress test do that caused damage to my heart and triggered this progressive diastolic progression?

    * Assuming that the answer to the above questions are that the stress test damaged my mitochondira, what was the underlying process that caused this damage?

    * What do you think caused me to lose my voice?

    * Why do you think I'm experiencing Stage IV HF symptoms with Stage 2 Diastolic Dysfunction? Diastolic dysfunction and low blood volume?

    * What do you think is causing ME/CFS low blood volume?

    * Should we try to correct this low blood volume or is it a compensatory response?

    * Is there anything that I can do to treat all the damage that this stress test caused to my heart (I'm assuming mitochondrial damage) to prevent crossing the event horizon into full blown diastolic heart failure and death?

    * Why do you think there is no research going on with regard to the heart, when heart failure and cancer are the two main causes of ME/CFS deaths? I reviewed all the research from the latest ME/CFS conference, and there was no research into ME/CFS related heart failure.

    * Is my response unique, or are other ME/CFS patients having similar responses to these exercise/stress tests - Not just post-exertional malaise, but permanent disease progression?

    * Why aren't most ME/CFS researchers and patients aware of the serious danger of taking stress tests?

    Thanks in advance.
     
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  9. charles shepherd

    charles shepherd Senior Member

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    Justy

    We can send a free copy of this booklet to your GP - details on how to arrange this are on the MEA website:

    http://www.meassociation.org.uk/201...the-me-association-clinical-practice-booklet/
     
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  10. charles shepherd

    charles shepherd Senior Member

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    JKN - I'm sorry but I don't have time right now to answer your list of what are quite complex questions. I will try and answer some of them later today.
     
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  11. peggy-sue

    peggy-sue

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    I would be ill after an exercise stress test, I am only willing to put myself through it to prove to my stupid, ignorant uneducated gp that I am ILL.

    I gave the address of my practise to the MEA to get a purple booklet.

    Having it does not mean anybody will read it. There isn't a tick-box on their "duty-performed" forms for it.

    The "current state of knowleldge" according to NICE is completly inaccurate. It ignores all the true biomedical scientific evidence, it relies purely on cooked up psuedoscience.
    It specifically proscribes the sorts of tests I do need.

    That is why I am asking what tests I might be able to get because of black hairy tongue and unhealing sores, that would actually (sneakily) be relevant to my ME.

    I am currently in a difficult position, because I have had other problems which mean I need a general anaesthetic.

    I have had the so-called pre-op assessment. I was treated appalingly.
    The morbidly obese nurse clearly did not believe in ME. I gave her the Grace Charity booklet about ME patients in hospital. She asked if I had been diagnosed, I said no, apart from by myself, using the Canadian Criteria. She left the room and got another nurse to come and sit in with us. No explanation.
    (I assumed she has heard rumours about ME terrorists and thought I was about to attack her.)

    I aksed her to slow down several times - she was reading out lists of instructions to me in a flat monotone voice, making no allowances for punctuation. I had dreadful trouble understanding and following what she was saying.
    She told me; "She would not slow down, no. We are under time constraints."

    The 4th time I asked her to slow down was because I did not understand how we had got from the car park to half past 6 in the morning, but she just gave me a filthy look and continued to ignore me.

    She really got into her element when she was telling me that I had to stop taking all "my herbal things" for a fortnight beforehand.

    I do not take "herbal things". I take vitamins and minerals and EPA. I know the EPA can thin the blood a little, but nobody is supposed to be cutting me or drawing blood while under the anaesthetic. I know EPA makes my body work a lot better and will be of more benefit if I were to continue taking it, so that I can cope with the anaesthetic and recovery from the proceedure.

    I asked specifically about the other things and why, she had no answers. She just got angrier and angrier and basically said "Because I said so."

    Not very reassuring.

    There is no way I can allow anybody in that department to get their mitts on me and start doing things to me!
     
    Last edited: Apr 8, 2014
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Is that like the test that was done at residential school in Nottingham for the OU course Biology: Form and Function? I volunteered to be a guinea pig for that, and my scores were exceptionally good, even though that was the year I developed ME and I was suffering greatly from the extreme heat that year. (I know you took OU biology courses too.) That test involved a step exercise rather than a bike, and the subjects had to breathe via a mask to assess the content of expired breath. I have my results somewhere.[/quote]
     
    Last edited: Apr 8, 2014
  13. peggy-sue

    peggy-sue

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    I did "Biology: Brain and Behaviour" with the OU (as an associate student), before going on to a brick uni, gaining direct entry into second year, which was where I did the practical class on a bicycle with masks etc. to measure the expired gases. There are two bicycles with full setup in the physio lab. The hospital here is attached to the university. It's a teaching hospital. I worked for the university, in that hospital, before doing my degree.

    I seem to remember my scores were pretty good to - considering I was a smoker at the time.

    I think I have decided I am going to refuse the tests they currently want to do on me.

    I really am far too frightened of letting folk who are willfully ignorant of my messed up biochemistry, mess around with me.
     
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  14. peggy-sue

    peggy-sue

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    @AndyPandy
    I am really sorry to hear of your trouble with statins. I have a friend whose FM was caused by statins, but of course, nobody will admit to it.
    There is a MASSIVE pro-statin lobby going on in the NHS at the moment; the side-effects are being played down or just deliberately ignored.

    Helped of course, by the psycholgisation of ME and FM.
     
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  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @charles shepherd , Since I already have ME/CFS, would there be any danger in getting the tetnus booster I am due for?
     
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've been puzzling over why we had such good scores, and at first thought that at least in my case it might indicate that mitochondrial malfunction may be a later development, but I am pretty sure that I already had muscle weakness and personally think that this was mitochondria-related.

    Then it occurred to me that (without digging out my OU stuff) the test we did probably used VO2 max as a measurement, which Dr Snell has found to be unreliable, as discussed in this thread.
     
  17. WillowJ

    WillowJ Senior Member

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  18. charles shepherd

    charles shepherd Senior Member

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    As I have already indicated earlier in this discussion, when we were looking at vaccinations, there is a lot of anecdotal patient evidence to show that vaccinations, including tetanus, can help to trigger this illness - as well as causing an exacerbation of pre-existing symptoms.

    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



    The explanation probably lies in the fact that immunisations are designed to mimic the effects of an infection on the body's immune system.

    On the other hand, vaccinations are very effective at preventing a number of life-threatening infections - including tetanus. For example, when I was going to India I decided to update all my vaccinations, with the exception of hepatitis B, because the risk of an exacerbation was minimal compared to the risk of catching a life-threatening infection whilst travelling around India.

    So this is something that you need to discuss with your doctor.

    The MEA has an information leaflet that summarises all the information - anecdotal and research - relating to vaccines and ME/CFS. Similar information is in the MEA purple booklet.
     
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  19. alex3619

    alex3619 Senior Member

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    The typical formula used for injected vitamin B12 is hydroxocobalamin. It has powerful antioxidant and I think has anti-nitrosative properties as well. Benefit might not always extend from the vitamin activity. However many patients have problems with a range of metabolic issues that B12 might benefit, including leading to potentially increased glutathione and methyl donors. This requires a lot more research, and its disappointing that this didn't happen decades ago. That is not the fault of doctors and researchers, its primarily a fault of low funding in my opinion.

    A small clinical trial a few years ago showed a protocol of methyl folate and B12 benefited most patients. Sadly the man behind this died soon after. Another similar study is planned in the US. Anecdotally there are many who benefit from this, and some of us have clear metabolic issues which sometimes can be indicated with genetic testing. As an example I have elevated homocysteine.
     
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  20. Legendrew

    Legendrew Content team

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    I think many of these treatments help simply because ME/CFS patients, as many patients with chronic debilitating disease, are quite run down in general terms and the effect this has on metabolism is frequently understated. I myself had such severe vitamin D deficiency that I developed secondary hyperparathyroidism which has now thankfully been corrected and has helped me to feel quite a bit better than previously - although admittedly not close to perfect health by any stretch of the imagination. I imagine this all stemmed from simply being unable to get out in the sun all that much. I think the chances are pretty much zero that these treatments are going to cure anyone of ME/CFS but any help with symptoms is something I think all patients would jump at. The trouble is that without testing vitamins and specific nutritional problems its impossible to say what people are deficient in; a lot of problems can arise from too much of certain vitamins.
     
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