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

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

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

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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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

 

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.

They did that to me with Vitamin D. I was taking 2000IU / day, it was still in the 'supplementation recommended range' and they concluded 'no action was necessary'.

 

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.

This childishness really ticks me off. They block funding for research, dismiss the research that is done, refuse to try anything due to lack of research, contradict what the patient knows works, and refuse to test for known causes of fatigue, refuse to use common sense clinical judgement.

I am the only person to whom this looks like religious hatred?

 

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.

Since blood flow problems are an important factor, and we see references again and again to lack of oxygen and build-up of lactate, isn't it time to re-evaluate the contribution do hemorheology and Les Simpson's considerable body of researn into the role of shape changes in the erythrocyte population in a number of chronic. Illnesses, especially ME/CFS? In simple terms, in order to provide oxygen and remove lactates from the cells, red blood cells have to be able to 'deform' enough to travel through the micro circulation. The most commonly occurring cell shape, the boconcave discocyte, the red blood cell is able to do this. In several chronic illnesses, micro graphs of immediately fixed blood shows a high proportion of red blood cells which are of a variety of irregular shapes which are non- deformable, hence interfere with the passage of red blood cells through the micro circulation. Muscle cells, the cells in the cognitive areas of, the brain, and cells in the endocrine system are particularly vulnerable to the consequent lack of oxygen and build-up of lactates. This situation can explain the constellation of symptoms, especially the failure of the anaerobic muscle metabolism, and I would guess could go some way to explaining the mitochondria problems. There are relatively easily obtainablel supplements which can address blood flow problems of a this type, and many ME patients have benefitted in terms of improved levels of well being through trying these out. I am baffled on an ongoing basis, as I read the research that is going on, at the complete absence of what seems to me a very important piece of the jigsaw in trying to understand how this complicated illness works, and saddened by the consequent unavailability of some helpful information for patients.

I am also awaiting a trial of systematic rest and conservation of muscular exertion as a treatment - and the day when GET will finally be consigned to the same category as any dangerous drug.

 

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.

See elsewhere my comments on the work of Dr (PhD in biology, a research hemorheologisr) Les Simpson. One of his recommendations to improve blood flow is injections of B12 as hydrocobalamin. Glad to here it works for you. If Les' work were more widely recognised it may not have taken so long to find it!