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

April 7, 2014

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…

MEcvs Vereniging

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

Shepherd Mitochondria and Exercise

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.

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60 comments

{ 60 comments… read them below or add one }

Firestormm April 7, 2014 at 1:06 am

In October 2013, Andrew Gladman wrote an article about the Mitochondria that you also might like to read:

In Brief: Mitochondria and ME

Legendrew April 7, 2014 at 5:46 am

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.

charles shepherd April 7, 2014 at 7:30 am

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:

NK17 April 7, 2014 at 9:11 am

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.

charles shepherd April 7, 2014 at 10:04 am

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.

Thomas April 7, 2014 at 10:48 am

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

lnester7 April 7, 2014 at 10:51 am

@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 .

charles shepherd April 7, 2014 at 10:59 am

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

charles shepherd April 7, 2014 at 11:05 am

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.

Mij April 7, 2014 at 11:11 am

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.

Thomas April 7, 2014 at 11:11 am
charles shepherd

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

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.

charles shepherd April 7, 2014 at 11:17 am
Mij

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.

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.

charles shepherd April 7, 2014 at 11:17 am
lnester7

@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 .

Sorry – my reply should have been here – it is on a new entry

peggy-sue April 7, 2014 at 11:40 am

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.

charles shepherd April 7, 2014 at 12:02 pm
peggy-sue

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.

charles shepherd April 7, 2014 at 12:09 pm

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.

Valentijn April 7, 2014 at 12:16 pm
charles shepherd

So most UK doctors are reluctant to prescribe this vitamin. In addition, vitamin B12 is not a form of treatment endorsed by NICE.

The NICE "Do Not DO" guidelines even specifically recommend against B12 testing for ME patients. http://www.nice.org.uk/usingguidance/donotdorecommendations/detail.jsp?action=details&dndid=70

peggy-sue April 7, 2014 at 1:01 pm

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:

AndyPandy April 7, 2014 at 3:36 pm

@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?

charles shepherd April 7, 2014 at 4:16 pm
Valentijn

The NICE "Do Not DO" guidelines even specifically recommend against B12 testing for ME patients. http://www.nice.org.uk/usingguidance/donotdorecommendations/detail.jsp?action=details&dndid=70

charles shepherd April 7, 2014 at 4:23 pm

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.

charles shepherd April 7, 2014 at 4:23 pm
AndyPandy

@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?

charles shepherd April 7, 2014 at 4:26 pm

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.

charles shepherd April 7, 2014 at 4:26 pm
peggy-sue

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:

charles shepherd April 7, 2014 at 4:31 pm

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.

justy April 8, 2014 at 2:24 am
charles shepherd

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.

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.

JKN April 8, 2014 at 2:36 am

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.

charles shepherd April 8, 2014 at 2:41 am
justy

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.

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/

charles shepherd April 8, 2014 at 2:44 am
JKN

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 (http://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.

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.

peggy-sue April 8, 2014 at 6:33 am

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!

MeSci April 8, 2014 at 10:22 am
peggy-sue

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.

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]

peggy-sue April 8, 2014 at 10:43 am

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.

peggy-sue April 8, 2014 at 11:37 am

@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.

Little Bluestem April 9, 2014 at 2:34 am

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

MeSci April 9, 2014 at 2:45 am
peggy-sue

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'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.

WillowJ April 9, 2014 at 3:58 am

@JKN you might be interested in some of these papers:
http://www.ncbi.nlm.nih.gov/pubmed/?term=hollingsworthau "chronic fatigue syndrome"

charles shepherd April 9, 2014 at 5:05 am
Little Bluestem

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

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.

alex3619 April 9, 2014 at 5:41 am
charles shepherd

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.

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.

Legendrew April 9, 2014 at 6:59 am
alex3619

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.

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.

charles shepherd April 9, 2014 at 7:42 am

There is quite a lot of anecdotal (= patient) evidence, and some research evidence, to show that vitamin D deficiency can occur in people with moderate and severe ME/CFS – because they are seldom (or not at all) outside in the sunshine. The MEA guidelines for doctors therefore recommends that groups at risk should be tested (a simple blood test for 25-hydroxyvitamin D) for vitamin D levels and that vitamin D supplements should be taken by those at risk, and appropriate supplementation should be given to people with a proven vitamin D deficiency. The role of vitamin D, and vitamin D deficiency, is covered in the research and treatment sections of the MEA purple booklet. We also have an MEA information leaflet on vitamin D assessment, deficient, prevention. and treatment.

charles shepherd April 9, 2014 at 7:45 am
charles shepherd

There is quite a lot of anecdotal (= patient) evidence, and some research evidence, to show that vitamin D deficiency can occur in people with moderate and severe ME/CFS – because they are seldom (or not at all) outside in the sunshine. The MEA guidelines for doctors therefore recommends that groups at risk should be tested (a simple blood test for 25-hydroxyvitamin D) for vitamin D levels and that vitamin D supplements should be taken by those at risk, and appropriate supplementation should be given to people with a proven vitamin D deficiency. The role of vitamin D, and vitamin D deficiency, is covered in the research and treatment sections of the MEA purple booklet. We also have an MEA information leaflet on vitamin D assessment, deficient, prevention. and treatment.

Vitamin D levels in ME/CFS – this paper could be used if a doctor is unwilling to investigate the possibility of vitamin D deficiency in someone with ME/CFS who falls into an at risk group.

Int J Vitam Nutr Res. 2009 Jul;79(4):250-4. doi: 10.1024/0300-9831.79.4.250.
Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey.
Berkovitz S1, Ambler G, Jenkins M, Thurgood S.
Author information

Abstract
INTRODUCTION:
Patients with chronic fatigue syndrome (CFS) may be at risk of osteoporosis due to their relative lack of physical activity and excessive time spent indoors, leading to reduced vitamin D synthesis. We hypothesized that serum 25-OH vitamin D levels are lower in CFS patients than in the general British population.
SUBJECTS AND METHODS:
We performed a retrospective survey of serum 25-OH vitamin D levels in 221 CFS patients. We compared this to a group of patients attending the hospital for other chronic conditions and to a large British longitudinal survey of 45-year old women, using a variety of appropriate statistical approaches.
RESULTS:
25-OH vitamin D levels are moderately to severely suboptimal in CFS patients, with a mean of 44.4 nmol/L (optimal levels >75 nmol/L). These levels are lower and the difference is statistically significant (p<0.0004) than those of the general British population from a recent national survey, but similar to those in patients with other chronic conditions.
CONCLUSIONS:
This data supports the recommendation made in recent NICE guidelines that all patients with moderate to severe CFS should be encouraged to obtain adequate sun exposure and eat foods high in vitamin D. Oral or intramuscular vitamin D supplementation should be considered for those whose levels remain suboptimal.

Mij April 9, 2014 at 9:50 am

@charles shepherd thank you so much for all the support here, your time is much appreciated.

What some are over looking is that vitamin D deficiency in ME may be from lack of sun exposure (for sure), but also low Magnesium levels which is an issue for us. I took magnesium and taurine injections for years and my D levels went right up. This text states, "magnesium depletion may impair vit D metabolism".

Low serum concentrations of 1,25-dihydroxyvitamin D in human magnesium deficiency.
Rude RK, Adams JS, Ryzen E, Endres DB, Niimi H, Horst RL, Haddad JG Jr, Singer FR.
Abstract
The effect of magnesium deficiency on vitamin D metabolism was assessed in 23 hypocalcemic magnesium-deficient patients by measuring the serum concentrations of 25-hydroxyvitamin D (25OHD) and 1,25-dihydroxyvitamin D [1,25-(OH)2D] before, during, and after 5-13 days of parenteral magnesium therapy. Magnesium therapy raised mean basal serum magnesium [1.0 +/- 0.1 (mean +/- SEM) mg/dl] and calcium levels (7.2 +/- 0.2 mg/dl) into the normal range (2.2 +/- 0.1 and 9.3 +/- 0.1 mg/dl, respectively; P less than 0.001). The mean serum 25OHD concentration was in the low normal range (13.2 +/- 1.5 ng/ml) before magnesium administration and did not significantly change after this therapy (14.8 +/- 1.5 ng/ml). Sixteen of the 23 patients had low serum 1,25-(OH)2D levels (less than 30 pg/ml). After magnesium therapy, only 5 of the patients had a rise in the serum 1,25-(OH)2D concentration into or above the normal range despite elevated levels of serum immunoreactive PTH. An additional normocalcemic hypomagnesemic patient had low 1,25-(OH)2D levels which did not rise after 5 days of magnesium therapy. The serum vitamin D-binding protein concentration, assessed in 11 patients, was low (273 +/- 86 micrograms/ml) before magnesium therapy, but normalized (346 +/- 86 micrograms/ml) after magnesium repletion. No correlation with serum 1,25-(OH)2D levels was found. The functional capacity of vitamin D-binding protein to bind hormone, assessed by the internalization of [3H]1,25-(OH)2D3 by intestinal epithelial cells in the presence of serum was not significantly different from normal (11.42 +/- 1.45 vs. 10.27 +/- 1.27 fmol/2 X 10(6) cells, respectively). These data show that serum 1,25-(OH)2D concentrations are frequently low in patients with magnesium deficiency and may remain low even after 5-13 days of parenteral magnesium administration. The data also suggest that a normal 1,25-(OH)2D level is not required for the PTH-mediated calcemic response to magnesium administration. We conclude that magnesium depletion may impair vitamin D metabolism.

PMID:
3840173
[PubMed - indexed for MEDLINE]

MeSci April 9, 2014 at 9:59 am
Mij

@charles shepherd thank you so much for all the support here, your time is much appreciated.

What some are over looking is that vitamin D deficiency in ME may be from lack of sun exposure (for sure), but also low Magnesium levels which is an issue for us. I took magnesium and taurine injections for years and my D levels went right up. This text states, "magnesium depletion may impair vit D metabolism".

Low serum concentrations of 1,25-dihydroxyvitamin D in human magnesium deficiency.
Rude RK, Adams JS, Ryzen E, Endres DB, Niimi H, Horst RL, Haddad JG Jr, Singer FR.
Abstract
The effect of magnesium deficiency on vitamin D metabolism was assessed in 23 hypocalcemic magnesium-deficient patients by measuring the serum concentrations of 25-hydroxyvitamin D (25OHD) and 1,25-dihydroxyvitamin D [1,25-(OH)2D] before, during, and after 5-13 days of parenteral magnesium therapy. Magnesium therapy raised mean basal serum magnesium [1.0 +/- 0.1 (mean +/- SEM) mg/dl] and calcium levels (7.2 +/- 0.2 mg/dl) into the normal range (2.2 +/- 0.1 and 9.3 +/- 0.1 mg/dl, respectively; P less than 0.001). The mean serum 25OHD concentration was in the low normal range (13.2 +/- 1.5 ng/ml) before magnesium administration and did not significantly change after this therapy (14.8 +/- 1.5 ng/ml). Sixteen of the 23 patients had low serum 1,25-(OH)2D levels (less than 30 pg/ml). After magnesium therapy, only 5 of the patients had a rise in the serum 1,25-(OH)2D concentration into or above the normal range despite elevated levels of serum immunoreactive PTH. An additional normocalcemic hypomagnesemic patient had low 1,25-(OH)2D levels which did not rise after 5 days of magnesium therapy. The serum vitamin D-binding protein concentration, assessed in 11 patients, was low (273 +/- 86 micrograms/ml) before magnesium therapy, but normalized (346 +/- 86 micrograms/ml) after magnesium repletion. No correlation with serum 1,25-(OH)2D levels was found. The functional capacity of vitamin D-binding protein to bind hormone, assessed by the internalization of [3H]1,25-(OH)2D3 by intestinal epithelial cells in the presence of serum was not significantly different from normal (11.42 +/- 1.45 vs. 10.27 +/- 1.27 fmol/2 X 10(6) cells, respectively). These data show that serum 1,25-(OH)2D concentrations are frequently low in patients with magnesium deficiency and may remain low even after 5-13 days of parenteral magnesium administration. The data also suggest that a normal 1,25-(OH)2D level is not required for the PTH-mediated calcemic response to magnesium administration. We conclude that magnesium depletion may impair vitamin D metabolism.

PMID:
3840173
[PubMed - indexed for MEDLINE]

Just found the full text pdf here.

charles shepherd April 9, 2014 at 2:29 pm
charles shepherd

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.

You might also find this video of a presentation by Prof Mark VanNess in Bristol useful:

https://www.youtube.com/watch?v=q_cnva7zyKM

I attended a half day physicians workshop with Mark and his team at the IACFS conference in San Francisco last month and am currently writing up a detailed report (7,600 words so far) of what was a very interesting clinical and research meeting.

Nico April 13, 2014 at 3:35 pm
charles shepherd

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

Dear Dr. Shepard, My physiology changed after the Hep B vaccine in 1999. I got very sick after each shot. When the series was done, the first symptoms of physiologic change was "leaden legs" when exercising. Exercise tolerance diminished remarkably (I was very athletic). I had an MMR a few months before. I don't think that helped matters much. Thank you for somewhat validating my theory re: what really, really got the ball rolling. I'm not sure if this helps your research, I don't remember doing a survey at any time about this.

Sushi April 21, 2014 at 12:41 pm

Science to Patients, video # 40: Dr Charles Shepherd–ME & possible treatments.

Questions of patients Dr. Charles Shepherd answers in this video are:

- What are the most common symptoms in ME?
- Which symptoms can be treated?
- What other treatment suggestions can you give?
- What help can be given to very severe ME-patients?

peggy-sue April 22, 2014 at 12:27 pm

Getting back to B12, briefly, because somebody has just posted a link to this paper in another thread.
http://jrs.sagepub.com/content/92/4/183

It would appear that simon wesseley himself found evidence of B12 deficiency in '99.
But he appears to have conveniently "forgotten" this.

SOC April 22, 2014 at 12:33 pm
peggy-sue

Getting back to B12, briefly, because somebody has just posted a link to this paper in another thread.
http://jrs.sagepub.com/content/92/4/183

It would appear that simon wesseley himself found evidence of B12 deficiency in '99.
But he appears to have conveniently "forgotten" this.

Nah, he believes we're psychogenically making ourselves physically ill. So any objective measures are still explained away by our supposed ability to create physical illness by just thinking wrongly. :rolleyes:
From Wikipedia — Psychogenic Disease

Psychogenic diseases are physical illnesses that stem from emotional or mental stresses.[1]

peggy-sue April 22, 2014 at 12:38 pm

You're using big words, @SOC :eek:;)

Are you saying that he's excusing the low B12, on the grounds that we managed to supress it with "mind control".

Actually, shouldn't the CIA be interested in us if we have such amazing mind control? :whistle:
After all, they did try to train men to kill goats by staring at them. :p

PNR2008 April 22, 2014 at 1:32 pm

By staring at people @peggy-sue, the only response is making them uncomfortable….sometimes very uncomfortable but certainly not CIA capabilities. So I'm in the clear. lol

Valentijn April 22, 2014 at 1:34 pm
peggy-sue

Actually, shouldn't the CIA be interested in us if we have such amazing mind control? :whistle:
After all, they did try to train men to kill goats by staring at them. :p

Well it worked, didn't it? :rofl:

Though I suppose it's a similar approach to psychosomatic research: stare at the goats long enough, and some will randomly drop dead eventually!

SOC April 22, 2014 at 2:37 pm
peggy-sue

You're using big words, @SOC :eek:;)

Are you saying that he's excusing the low B12, on the grounds that we managed to supress it with "mind control".

Yup, that's the theory of psychogenic disease. Convenient, isn't it?

Actually, shouldn't the CIA be interested in us if we have such amazing mind control? :whistle:

How do you know they're not? :ninja:

Rob Wijbenga April 25, 2014 at 4:51 am

On April 21, the next webinar of dr. Charles Shepherd has been broadcast, in which he talks about ME, its most significant symptoms and possible treatments:

http://youtu.be/R7JtNImePlY

Rob Wijbenga April 25, 2014 at 4:59 am
Rob Wijbenga

On April 21, the next webinar of dr. Charles Shepherd has been broadcast, in which he talks about ME, its most significant symptoms and possible treatments:

http://youtu.be/R7JtNImePlY

http://youtu.be/DmyR33LeUPs is the right link, tho' Llewellyn King's video is worthwhile watching as well :D

this broadcast was followed by a very noteable chatwingsession with dr. Shepherd on Thursday 24th April.

if you would wish to receive all transcripts of both webinars and chatsessions, simply send your request to wvp@me-cvsvereniging.nl

Next webinar within the Dutch porject Science to Patients will be broadcast on May 5th,
on promising discoveries & researches.

Next inernational chatsession with dr. Charles Shepherd will be on Thursday 15th May, from 5 pm cet onward. (logging in with http://chatwing.com/mecvsvereniging.wvp)

Leopardtail June 9, 2014 at 3:30 am
Legendrew

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.

I feel you made a good point here I consider very strongly that once Mito dysfunction occurs one must deal with it, it becomes central in the same way that lack of Insulin does in Type I diabetes even though immunology create the disease. However remains difficult to know the extent to which it's an Etiology or a symptom with certainty. We need to test people very early in the disease process and while at low severity. It is attractive in that it can explain pretty much every feature of the disease.

A.B. June 9, 2014 at 4:01 am

What makes the Hepatitis B vaccine different?

Leopardtail June 9, 2014 at 4:34 am
peggy-sue

Getting back to B12, briefly, because somebody has just posted a link to this paper in another thread.
http://jrs.sagepub.com/content/92/4/183

It would appear that simon wesseley himself found evidence of B12 deficiency in '99.
But he appears to have conveniently "forgotten" this.

Funny how much evidence he 'forgets' isn't it?

Leopardtail June 9, 2014 at 4:37 am
charles shepherd

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:

Dr Shepperd,

when discussing blood flow – why is volume always ignored by medics? A very small scale experiment showed that restoring blood volume (with saline) caused the nervous system of ME patients to normalise. The nervous system (in that limited number of patients) was prioritising the core (heart and lungs) and reducing peripheral blood flow. Similar issues are known in other diseases causing marked reduction in blood volume. I find it quite scandalous that none of our national charities have repeated this and verified it (either way).

I have personally experienced complete restoration of mental function with administration of Saline.

Vis-a-vis Mitochondria in the circumstance – blood cells also show mitochondrial under-performance (various papers by Howard and MyHill) hence their issue would not be 'blood supply'. I do however agree that blood supply seems likely to aggravate issues in peripheral skeletal muscle – there does seem to be tendency to forget we have mitochondria outside muscle however :-). Those of us for whom mental dysfunction is our biggest issue would quite like some focus there!

Also Myhill has identified two groups of patients. One produces more lactic acid under when 'going anaerobic' the other uses the very destructive process in which two molecules of ADP become one of ATP. Given these two groups, just how reliable is lactic acid as an indicator of Mito dysfunction rather than pain?

Mij June 9, 2014 at 8:32 am
A.B.

What makes the Hepatitis B vaccine different?

Possibly because you have to get a series of x3 Hep B vaccines within a six month period. Intial dose, 30 days and 6 months. Or, x4. Initial, 1 month, 2 months and booster in 1 year.

Leopardtail June 9, 2014 at 1:57 pm
charles shepherd

There is quite a lot of anecdotal (= patient) evidence, and some research evidence, to show that vitamin D deficiency can occur in people with moderate and severe ME/CFS – because they are seldom (or not at all) outside in the sunshine. The MEA guidelines for doctors therefore recommends that groups at risk should be tested (a simple blood test for 25-hydroxyvitamin D) for vitamin D levels and that vitamin D supplements should be taken by those at risk, and appropriate supplementation should be given to people with a proven vitamin D deficiency. The role of vitamin D, and vitamin D deficiency, is covered in the research and treatment sections of the MEA purple booklet. We also have an MEA information leaflet on vitamin D assessment, deficient, prevention. and treatment.

Dr Sheppherd,

is there evidence the presence in the Sun is that cause of Vit D deficiency or is this an assumption?

I ask because my Aunt and I both have low 1,25 and 0,25 vitamin D in summer. I am out in the garden most days (resting) despite an ability rating of 30 at that time of year. My Aunt is constantly out. I realise more in the 25% group may fit the hypothesis, but what evidence exists that sunshine is the issue rather than something metabolic?

Could this be an important link in the chain regarding the pathology of ME?

Leo

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