Research from Germany that may help explain some of post exertional malaise
Mitochondrial Depletion: Research from... - Ramsays Disease
Mitochondrial Depletion
Written by
Ian123
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18 Replies
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The model suggested that mitochondrial depletion results in more difficulty with longer bouts of moderate exercise, than with shorter bouts of intense exercise. This pattern was opposite to that found in the controls
More evidence that NICE guidelines on graded exercise therapy is untenable.
The PACE trial of 2011 that attempted justification was after Sarah Myhill
ijcem.com/files/IJCEM812001... had provided the science that would be ignored for dogma proving a treatment safe/successful when evidence of the contrary existed.
Held real research back more than 30 years
Prof Mark VanNess - Dept of Health Exercise and Sports Sciences brings an outsiders look into this research that is not corrupted by searching for funding for theories that academic reputation are built on. Bringing such people in brings new expertise that uses sports science instead of psychiatry for deciding the merits of exercise quantifying risk over benefit.
ME Association have a report meassociation.org.uk/2015/0... that NICE are wrong with guidelines.
Prolonged recovery I believe more than this a doctor studies for I am no doctor.
An explanation for heavy stiff legs that recover slower is a scientists challenge faced with this disease. Should the science ever explain events improvements in treatment can reduce the symptoms, no magical cure but a greater quality of life or at least the hope of better management.
Feels good...and important... substantiated research... around this vital area (perhaps at the foothills of further findings). Wonderful to learn, thank you Ian 
And then, I'm wondering and curious...how do we maintain mobility, encourage the best functioning of our bodies...
Feels like we become our own 'scientists and discoverers' in some ways...
Myself, once a week, I 'do' a little 5-10 minute session of relaxation, stretching and breathing, with 1-2 minutes of gentle pilates movements to encourage core strength. I've arranged for a physio to call me by phone, as housebound. The physio is a lovely, kind person, so this brings continuity of care too.
At the moment, I manage this 40% of weeks, with 1-3 days pem...and more recently only 1 day of pem, because we subtly tweaked the balance.
My wish is to stabilise this, over the Summer, til I can repeat each week...then, perhaps, if energy builds a little, gradually repeat on another day in the week... Or is this approach needing a different angle? Would it be better to 'do' 1 minute each day perhaps?
Well, the cfs clinic recommend 5 minutes, 5 days a week...yet after 1.5 years I'm quite far off...a little Himalayas ! Yet I truly wish to keep functioning as far and fully as possible. I wonder what others here are finding, in gentle, subtle ways?
My eventual wish is to do some Chi Gung or T'ai Chi movements, whether lying down or in a chair...and, if wishes and dreams may come true...preferably in an open space or forest garden and having that vision feels lovely and peaceful...
When considering the most effective action for maintaining function can I suggest a further research article meresearch.org.uk/news/musc... guides the personal exploration of what can be tolerated with the least payback as acidity damages good work on muscle conditioning.
My daily routine starts with some gentle stretching once the pain management is under control an attempt at keeping some fine motor skills also helps begin the day slowly. Having a routine that is flexible enough that adaptation can be made when feedback from the body dictates gives me I have this disease it does not have me outlook.
Patience in the search for realization of dreams there is little science guiding the approach that can persevere with minuscule improvements.
Appreciating so much, Ian, both the reference and gentle sharing, encouraging.
And yes, also sharing (well, learning to cultivate more) I have this disease it does not have me outlook.
Feeling how...somehow vital in essence, feeling I am the artist-scientist of my life, my hours...
As an artist any work is a representation of a personal view an individual thing some may find it useful for describing their own view. Merit can only be judged by the artist making the work does it do what was intended, science does not trade in feelings as an artist does.
If quality of life feels improved without increasing harm these are personal choices that can only be guided in making the best that can be with the information as we see it.
I agree that research into walking and other forms of pacing exercises carried out in the USA to poor" guinea pigs" who are used by holding back their social security, is torture in all but name.
I totally agree. Their is more to the so called research into the causes of ME and the bogus illness that bears the name Chronic Fatigue Syndrome. By its pure name CFS is an easy way out for so called interested doctors and medics all over the world. Patients are being forced to accept a non diagnosis that is often ruled by an iron fist.
I believe the tide is changing but those conflating fatigue with a neurological condition are not about to renounce lucrative careers anytime soon if any possibility exists for delaying tactics previous history suggests they will be exploited.
The convenient dustbin diagnosis covered by six months of unexplained fatigue saves face for a medical profession that have no treatment beyond symptom management and allows governments a magical solution where a problem disappears from the general populations consciousness.
You are so right. Unlike the people with Aids years ago,. patients with ME cannot pick up their beds and walk down Downing Street. It always amazes me that
nurses and doctors have very little knowledge of a disease that is more prevalent than breast cancer. I believe that this could reach plague proportions if so very little is done now. One day the Governments around the world will be hit by the biggest bill they have ever seen. ME is catching. Three people down my road who talked to one another have all got ME.
I am interested to know whether like me believe that ME is a disease of the brain. But I am also interested that ME as such seems to be a fairly new disease that coincides with relatively modern practices. I smell a rat.
The dirty medical politics has avoided teaching about ME in medical schools world wide with books such as Oslers Web and the recently published Science Politics and ME covering why this happened.
Myalgic Encephalomyelitis muscle pain, “myalgic”, with “encephalomyelitis” inflammation of the brain and spinal cord was coined around 1956 but the disease has a much older history earlier called neurasthenia, atypical polio, soldiers heart, a never ending list that said medical science does not know what is happening.
The Lake Tahoe outbreak pushed the federal agencies into using a psychological explanation of hysteria and irrational illness beliefs that saved money on payouts for medical insurance companies, took away public pressure for research funding at a time when AIDS was almost at it's peak, while at the same time providing a CFS diagnosis for anything falling outside of the usually accepted categories.