A Winter’s Tale – a former mountain climber reflects on PEM & ME/CFS/FM

Health rising blog post, by Simon Parker, 5 Feb 2019: A winter’s tale – a former mountain climber reflects on Post Exertional Malaise and ME/CFS/FM.

Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms.

I often find myself trying to explain to other people what the delayed fatigue is like by giving an example that describes the degree of exhaustion I experience …

Have you ever been Winter Climbing?

Well let me tell you a tale …

[Simon tells the story of a tough climb in snow and ice, concluding:]

I was utterly exhausted from the physical efforts of the day and I hadn’t realised that the cotton underclothing I was wearing was soaked through. A combination of sweat from the physical effort of the climb and the copious amounts of water from the snow showered over me during the boulder-in-the-gully incident had seeped through my clothes and my padded mountain jacket.

The heat from my body core was draining away and the sub-zero wind chill was not helping. Tunni walked ahead of me breaking a path and I followed, using his footsteps to make each step I took easier. By the time we reached the mouth of the cwm, I was flailing and failing. Each step required a Herculean effort and I was falling further and further behind.

I remember thinking that I would sit down and rest for a couple of minutes to recover myself. Even as I lay back into the snowdrift, I realized that if I didn’t get up, there and then I would simply fall asleep and die of exposure, and at this juncture my resolve was overcome by a fatigue that went beyond movement and reason. I had become hypothermic. Blood wasn’t reaching my legs, arms, or brain. I was drifting into that blissful state between waking and sleep.

My brain was shutting down and I didn’t care …

All I recall of the remainder of that day is a dim memory of being hauled to my feet and half-carried the remainder of the way to the car; sometime later standing in front of a roaring fire whilst being plied with large mugs of hot tea; and a long hot bath to gently re-heat my body core back to normal.

That’s what friends are for.

They save your life.

And now, in 2019, I get to feel like this whenever I do more than I’m capable of; like walking upstairs or having a bath.

And when I’m asked, ‘How fatigued are you’?

Well, this is my measure.

Paul Tunnicliffe – Diary entry for 10 Feb 1996

“Winter Climb. Black Ladders. Eastern Gully with Simon, Loads of snow. Walk-in took 4 hours! v.knackered. climb took over 4 hours. so much banked up powder the climb was hard to start, even. Si had a couple of new screws & pegs and I got placements on the first bit and belayed on the lip with no rope left. Snow in the gully proper a bit dodgy looking and loose(ish) and we ‘daggered’ about 90% of it. 5.00pm top out and v.exhausting walk out mainly with head-torches during which I lost the spare battery and Swiss army knife and Simon had an epic! A good day.”
Dedicated to Paul ‘Tunni’ Tunnicliffe and Mark Pither

Simon Parker is now 62 years old. He lives in rural Anglesey, North Wales. His story:

Simon Parker
In 2000 I was completing my PhD in Pedagogy at Bangor University North Wales and enjoying an active outdoor lifestyle, when I caught a bout of flu that resulted in increasing periods of debilitating fatigue and pain after exercising. I was diagnosed in 2003 with fibromyalgia and ME/CFS.

When I was first diagnosed I underwent the procedures recommended by my local ME/pain clinic (CBT & GET) who advised me to ‘exercise to my full capacity as the condition is temporary’ – a course of action which only made my symptoms worsen.

Luckily I found a ME/CFS consultant (Dr Sarah Myhill) whose tests and approach (leaky gut, PK diet, and mitochondrial functioning, etc.) made a huge difference in understanding the condition and in taking appropriate steps to mitigate the worst of the symptoms.

My symptoms have increased in severity over time and I now spend about 80% of my time in bed and the remaining 20% of my time trying not to over-exert myself while making time-lapse videos of blossoming trees in my locale each Spring.

I still (literally) dream of going climbing and live in hope that the current research avenues will one day lead to a cure or at the least an alleviation of the symptoms so that I could go rock climbing again with my son.

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Evaluation of four clinical laboratory parameters for the diagnosis of ME

Evaluation of four clinical laboratory parameters for the diagnosis of myalgic encephalomyelitis, by Kenny L. De Meirleir, Tatjana Mijatovic,
Krishnamurthy Subramanian, Karen A. Schlauch and Vincent C. Lombardi in
Journal of Translational Medicine 2018 16:322 [Published: 21 November 2018]

Research abstract:

Background:
Myalgic encephalomyelitis (ME) is a complex and debilitating disease that often initially presents with flu-like symptoms, accompanied by incapacitating fatigue. Currently, there are no objective biomarkers or laboratory tests that can be used to unequivocally diagnosis ME; therefore, a diagnosis is made when a patient meets series of a costly and subjective inclusion and exclusion criteria. The purpose of the present study was to evaluate the utility of four clinical parameters in diagnosing ME.

Methods:
In the present study, we utilized logistic regression and classification and regression tree analysis to conduct a retrospective investigation of four clinical laboratory [tests] in 140 ME cases and 140 healthy controls.

Results:
Correlations between the covariates ranged between [− 0.26, 0.61]. The best model included the serum levels of the soluble form of CD14 (sCD14), serum levels of prostaglandin E2 (PGE2), and serum levels of interleukin 8, with coefficients 0.002, 0.249, and 0.005, respectively, and p-values of 3 × 10−7, 1 × 10−5, and 3 × 10−3, respectively.

Conclusions:
Our findings show that these parameters may help physicians in their diagnosis of ME and may additionally shed light on the pathophysiology of this disease.

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Intro to self management course, Llandudno 13 Feb 2019

Introduction to self management course

  • a course for adults with long term health conditions & carers
  • at Craig y Don Community Centre, Llandudno
    Wednesday 13th February 2019, 10-1 pm

Introduction to Self Management is a free 3 hour session to introduce some ‘tools’ and information to improve your ability to manage your health & wellbeing.

Topics:

  • Setting the scene
  • Positive thinking
  • Managing daily activities
  • Action planning
  • Medication usage
  • Healthy eating
  • Communication skills
  • Problem solving
  • Physical activity
  • Relaxation

To book a place, please contact the Self Care Office on 03000 852280 or e-mail eppcymru.bcuhb@wales.nhs.uk.

Find out about all courses on the Betsi Cadwaladr University Health Board website.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is relevant for you and you are well enough to cope.

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Relationship between exercise-induced oxidative stress changes & parasympathetic activity in CFS

Relationship between exercise-induced oxidative stress changes and parasympathetic activity in Chronic Fatigue Syndrome: an observational study in patients and healthy subjects, by Andrea Polli, Jessica Van Oosterwijck, Jo Nijs, Uros Marusic, Inge De Wandele, Lorna Paul, Mira Meeus , Greta Moorkens, Luc Lambrecht, Kelly Ickmans

Research abstract:

Purpose:
Oxidative stress has been proposed as a contributor to pain in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). During incremental exercise in patients with ME/CFS, oxidative stress enhances sooner and antioxidant response is delayed. We explored whether oxidative stress is associated with pain symptoms or pain changes following exercise, and the possible relationships between oxidative stress and parasympathetic vagal nerve activity in patients with ME/CFS versus healthy, inactive controls.

Methods:
The present study reports secondary outcomes from a previous work. Data from 36 participants were studied (women with ME/CFS and healthy controls). Subjects performed a submaximal exercise test with continuous cardiorespiratory monitoring. Levels of thiobarbituric acid–reactive substances (TBARSs) were used as a measure of oxidative stress, and heart rate variability was used to assess vagal activity. Before and after the exercise, subjects were asked to rate their pain using a visual analogic scale.

Findings:
Significant between-group differences in pain at both baseline and following exercise were found (both, P < 0.007). In healthy controls, pain was significantly improved following exercise (P = 0.002). No change in oxidative stress level after exercise was found. Significant correlation between TBARS levels and pain was found at baseline (r = 0.540; P = 0.021) and after exercise (r = 0.524; P = 0.024) in patients only. No significant correlation between TBARS and heart rate variability at baseline or following exercise was found in either group. However, a significant correlation was found between exercise-induced changes in HRV and TBARS in healthy controls (r = −0.720; P = 0.001).

Implications:
Oxidative stress showed an association with pain symptoms in people with ME/CFS, but no exercise-induced changes in oxidative stress were found. In addition, the change in parasympathetic activity following exercise partially accounted for the change in oxidative stress in healthy controls. More research is required to further explore this link.

Read article in full

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Stress management courses Newport, 6 & 13 Feb 2019

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Newport

  • Wed 6th Feb – 13thMar 2019, 6-8 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

Newport

  • Wed 13th Feb – 20th Mar 2019,     1-2.45 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

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Changes in the transcriptome of circulating immune cells of a N Z cohort with ME/CFS

Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome, by Eiren Sweetman, Margaret Ryan, Christina Edgar, Angus MacKay, Rosamund Vallings, Warren Tate in International Journal of Immunopathology and Pharmacology vol 33 2019 [Published January 11, 2019]

 

Research abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group (10 patients), with age/gender-matched healthy controls (10 control subjects).

Twenty-seven gene transcripts were increased 1.5- to sixfold and six decreased three- to sixfold in the patient group (P < 0.01). The top enhanced gene transcripts, IL8, NFΚBIA and TNFAIP3, are functionally related to inflammation, and significant changes were validated for IL8 and NFΚBIA by quantitative polymerase chain reaction (qPCR).

Functional network analysis of the altered gene transcripts (P < 0.01) detected interactions between the products related to inflammation, circadian clock function, metabolic dysregulation, cellular stress responses and mitochondrial function. Ingenuity pathway analysis (P < 0.05) provided further insights into the dysfunctional physiology, highlighting stress and inflammation pathways.

This analysis provides novel insights into the molecular changes in ME/CFS and contributes to the understanding of the pathophysiological mechanisms of the disease.

From the conclusion:

Our exploratory approach has enabled us to obtain a rich differentially expressed gene dataset to identify changed biology in ME/CFS. We have identified the circadian rhythm dysregulation pathway as a new possible underlying cause of the unrefreshing sleep, fatigue and metabolic abnormalities seen in ME/CFS. Furthermore, impaired mitochondrial function and resulting oxidative stress, coupled with chronic immune-inflammatory signalling, provides a compelling explanation for the fatigue, cognitive dysfunction and post-exertion malaise experienced in ME/CFS.

Therefore, this study is a further step towards gaining an understanding of the disease process and identifying putative biomarkers to support clinical diagnosis. The biological pathways identified offer a rational explanation of the complex and often multi-systemic nature of ME/CFS.

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MESiG support group meets 4 Feb 2019, Cardiff

MESiG Support Group invites you to join them from 2 – 3.30 pm on Monday 4 February 2019 at Bethel Church Community Centre, Llangranog Road, Llanishen,  Cardiff, CF14 5BJ

Come and share your experiences of what helps you and what doesn’t, so all can learn and support each other, over tea/coffee and biscuits. All are welcome, please note that people with similar conditions are also welcome to come along.

More info: mesigwales@gmail.com      website

Next meeting: 4 March 2019

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Montgomery ME support group meets Wed 6 Feb 2019

You are invited to join people with ME and their carers for a chat and a cuppa at the Dragon Hotel, Montgomery on Wednesday 6 February 2019 between 2.30 and 3.30pm.

Contact Donna Teague beforehand to confirm the meeting is going ahead.  dateague@hotmail.co.uk

Next meeting: TBC

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ACTivate your life well-being course Neath, 4 Feb 2019

ACTivate your life courses

The course is based on Acceptance and Commitment Therapy which teaches people how to reduce their suffering and how to lead a richer, more fulfilling life by accepting the things they cannot control and making a commitment to do the things that they really care about.

We all experience suffering, pain and distress at some point in our lives, whether this be psychological or physical, so anyone and everyone is welcome to attend.

The course is run weekly over four sessions for approximately 2 hours with a break halfway through the session.

The four sessions:

  • ACT 1- You are not your mind
  • ACT 2- Facing up to your life
  • ACT 3- Being mindful
  • ACT 4- Living wisely, living well

Neath

  • Neath College D block, Dwr Y Felin Road, Neath SA10 7RF
  • Room: Main hall
  • Monday 4-25 Feb 2019    5.30 – 7.30 pm

The courses and workshops are free, self-referral and open access, so there is no need to book on or register, simply choose what you feel is the most suitable for you and turn up; feel free to bring someone along and spread the word. There is no attendance register, but it is recommended that you attend all of the sessions to get the most out of it, although you can always switch between courses to fit in with your commitments.

For more information contact the Living Life Well programme at Abertawe Bro Morgannwg Health Board.       07967612246      living.lifewell@wales.nhs.uk

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you.

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A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS

A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS, by Angus Mackay, Warren P Tate in International Journal of Immunopathology and Pharmacology Vol: 32 [published online: December 6, 2018]

 

Article abstract: 
A neuroinflammatory paradigm is presented to help explain the pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The hypothalamic paraventricular nucleus (PVN) is responsible for absorbing and processing multiple, incoming and convergent ‘stress’ signals, and if this cluster of neurons were affected (by neuroinflammation), the ongoing hypersensitivity of ME/CFS patients to a wide range of ‘stressors’ could be explained.

Neuroinflammation that was chronic and fluctuating, as ‘inflammatory-marker’ studies support, could reflect a dynamic change in the hypothalamic PVN’s threshold for managing incoming ‘stress’ signals. This may not only be a mechanism underpinning the characteristic feature of ME/CFS, post-exertional malaise, and its associated debilitating relapses, but could also be responsible for mediating the long-term perpetuation of the disease.

Triggers (sustained physiological ‘stressors’) of ME/CFS, such as a particular viral infection, toxin exposure, or a traumatic event, could also target the hypothalamic PVN, a potentially vulnerable site in the brains of ME/CFS susceptible people, and disruption of its complex neural circuitry could account for the onset of ME/CFS.

In common with the different ‘endogenous factors’ identified in the early ‘neuroinflammatory’ stages of the ‘neurodegenerative’ diseases, an as yet, unidentified factor within the brains and central nervous system (CNS) of ME/CFS patients might induce both an initial and then sustained ‘neuroinflammatory’ response by its ‘innate immune system’.  Positron emission tomography/magnetic resonance imaging has reinforced evidence of glial cell activation centred on the brain’s limbic system of ME/CFS patients.

Neuroinflammation causing dysfunction of the limbic system and its hypothalamus together with a consequently disrupted autonomic nervous system could account for the diverse range of symptoms in ME/CFS relating, in particular to fatigue, mood, cognitive function, sleep, thermostatic control, gastrointestinal disturbance, and hypotension.

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