Muscles

In ME/CFS, isometric muscle action can be problematic. This can be what is being referred to when muscle weakness or muscle fatiguability is referenced.

Isometrics where there is the requirement for holding muscle strength in a static position (compared to isotonic where the muscle shortens and lengthens). Examples are when you need to sustain a position EG keeping your arms above your head to braid your hair, holding a cup, plank position, or using your core muscle to stand upright. The exertion of force (eg pushing) can be isometric. Many yoga poses are isometric.

This 2010 Study showed premature discontinuation of isometric muscle contractions in fibromyalgia & CFS.

A 2011 Study hypothesised the cause may be lymphatic drainage and saw measurable improvement in quadricep isometric contraction following a treatment protocol of: effleurage to aid drainage in thoracic and cervical lymphatic vessels, Gentle articulation of thoracic and upper lumbar spine & ribs, Soft tissue massage of the paravertebral muscles, trapezii, levator scapulae, rhomboids & muscles of respiration, and manipulation of the thoracic and upper lumbar spinal segments in supine and side-lying position as required, Functional techniques to the sub-occipital region and the sacrum and Stimulation of the cranio-sacral rhythm. The treated participants were advised to aid the lymphatic drainage of the head and spine through a very gentle self massage routine that stimulates flow to the terminals of the lymphatics at the subclavian veins.

This was based on the theory that ‘articulatory techniques of the thorax and the soft tissue plus cranial techniques which are all designed to improve the respiratory mechanisms and blood and lymphatic fluid movement within the body and reduce disturbed afferent sympathetic impulses, the overall sympathetic nervous system eventually begins to function normally thus further improving the central lymphatic pump which increases toxic drainage in all body tissues, including skeletal muscle.’ …’The success of the treatment would imply that the fatigue in CFS/ME is possibly due to reduced blood and/or lymph flow and oxygenation.’… ‘Disturbance of normal sympathetic control as seen in CFS/ME offers a possible explanation regarding the reduced muscle function seen in this study. Spinal manipulation has been hypothesized as a method to improve afferent and efferent sympathetic activity and may aid the symptoms associated with CFS/ME.’

This study was a replication of the authors similar 2004 thesis.

As a final note Kurz and co-workers have shown that ‘histamine and serotonin were released from the oedematous tissue following manual lymphatic drainage and that circulation improved through increased output of adrenaline and noradrenaline.’

A review found ‘Patients have less peak isometric muscle strength compared to healthy sedentary control subjects.’

Wyller and colleagues (2008) compared 15 Norwegian adolescents with ME/CFS and 56 healthy adolescent controls. Those with ME/CFS had increased sympathetic activity at rest, with exaggerated cardiovascular responses to orthostatic stress, but attenuated cardiovascular responses to isometric exercise (IOM report).

This research is at odds with the more recent 2014 and 2017 studies which recommend isometric yoga as a treatment for ME/CFS, although both studies were small, used subjective outcomes only and were published in BPS journals. A 2018 Study using objective measures of HR & HRV however, was also effective.

Isometric leg strength was used as an outcome for a 2016 Study on Supplementation with Guanidinoacetic Acid; improvement occurred.

Isometric pinch strength was used as an outcome for a 2018 Study using Immunoadsorption to remove ß2 adrenergic receptor antibodies; despite it being otherwise successful, no significant change was found.

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Relationships & gut permeability

Following on from avoidant review (see original blog post https://holisticcfs.wordpress.com/2016/08/11/review-avoidant-by-jeb-kinnison/)

The level of distress and conflict in a primary relationship (in this case married couples) predicted intestinal permeability (IP), the degree LPS toxin biomarkers in the bloodstream due to bacterial translocation through the leaky gut wall, and the level of systemic inflammation as a result of this LPS. The higher the level of hostility in the marriage, the higher the level of LPS-binding protein (LBP) and CRP, and the greater the contribution to a proinflammatory milieu and inflammation-related disorders.

High cortisol is known to directly increase IP.

https://www.psyneuen-journal.com/article/S0306-4530(18)30395-0/pdf

Read more about attachment here: https://holisticcfs.wordpress.com/2016/10/31/attachment-part-2-forming-secure-relationships/

Relaxation: Frequency

Binaural beats: two different pure-tone sine waves, both with frequencies lower than 1500 Hz, with less than a 40 Hz difference between them, are presented to a listener dichotically (one through each ear). The binaural beat is the third, illusionary beat.

Headphones are a must.

**Delta: .5-3hz (slowest)

Low frequency. Sleep, meditation, healing, regeneration. Within.

Theta: 3-8hz

Meditation and intuition. Within.

Alpha: 8-12hz

Quiet present alertness.

Beta: 12-38hz (worst)

High frequency.

Cognitive tasks, decision making. Outward attention.

Beta1, 12-15Hz, ‘fast idle’, musing.
Beta2, 15-22Hz, high engagement, actively figuring something out.
Beta3, 22-38Hz, complex thought, integrating new experiences, high anxiety, excitement. Inefficient, tremendous amount of energy.

**Gamma: 38-42 (fastest)

Integration. Subtle. Mind must be quiet. Expanded consciousness.

delta and gamma beats are theoretically and anecdotally most helpful in me/cfs.

Theres minimal research on binaural beats; some found reducing pain, alternate states of consciousness and a very small study suggesting it reduces depression but also verbal memory recall. Note that research would likely need to be customised to be valid.

Simple iOS app (one for each frequency, this one is gamma); use with headphones

https://itunes.apple.com/au/app/gamma-waves-classical-music-for-studying-concentration/id979160786?mt=8

Binaural beats are only one form of neural entrapment.

Biofeedback can be used to train brain into states via Qeeg.

Solfeggio

Original scale was six ascending notes assigned to Ut-Re-Mi-Fa-Sol-La. The syllables for the scale were taken from a hymn to St. John the Baptist, Ut Queant Laxis, written by Paulus Diaconus.

UT – 396 Hz – turning grief into joy, liberating guilt and fear
RE – 417 Hz – undoing situations facilitating change
MI – 528 Hz – transformation, miracles, repairing DNA
FA – 639 Hz – relationship, connecting with spiritual family
SOL – 741 Hz – expression/solutions, cleaning, solving
LA – 852 Hz – returning to spiritual order

General relaxation music

The below song was studied and found to reduce anxiety by up to 65%

Living with ME

I wrote this a year ago, decided it was silly, emailed it to myself, and forgot about it.

On Tue, 4 Jul 2017 at 11:32 pm, Angela Flack <edibleangela@icloud.com> wrote:

Living with ME

a [mildly/darkly] humorous yet practical guide, written by a cookbook author, on coping with the symptoms of myalgic encephalomyelitis; this guide provides insight for family and loved ones into the lived experience of sufferers.

Brushing teeth

Time: allow 5-10 minutes

• baby toothbrush to not cause bleeding or microtears that lead to ulcers

• Plain toothpaste free of sls, parabens or menthol

• Charcoal powder

• Plastic container

• Cup of water

• Straw

Step one. Apply toothpaste to toothbrush, dip in charcoal

Step two. Sit In a reclined position with elbows resting on the bed

Step three. using small movements and taking deep breaths, brush your teeth. Keep your jaw relaxed and semi closed

Step four. Put the container to the edge of your mouth and incline your head to spit out of the corner of your mouth

Step five. sip water through straw, gently swish around and repeat spit

Step six. wet wipe your face

Step seven. Rest

Having a shower

You will need

• Inflatable pool bed

• Exfoliating glove

• Gentle sensitive facial cleanser

• Three towels

• Heart rate monitor

• Conditioner

• Comb

Time: allow 40-60 minutes

Step one. Lay in a fully reclined position on the inflatable bed

Step two. Direct water on the lower half of body and commence exfoliating with cleanser

Step three. Carer monitor for slurring; if slurring, open door

Step four. Apply conditioner to hair and carer use comb to unmatt hair

Step five. Monitor for slurring, overheating, or difficulty breathing. Change water temp or open door

Step six. Attempt staged roll over with assistance. Minimise use of arms throughout

Step seven. Rinse; check for itchy peeling skin not scrubbed

Step eight. Wrap in towel, get carried onto bed put on another towel, wrap hair in towel.

Step nine. Lay very still for 30-60minutes without speaking or texting. Nap if necessary.

Step ten. Remove body towel and replace with blanket once no longer damp

Step eleven. Comb hair as it dries to prevent matting. Keep wrapped until air dried to retain warmth.

Peeing with ME

You will need:

• male/female camping urinal purchased on eBay for $2

• Paper towel

• Wet wipes optional

Step one. Get assistance rolling onto your back

Step two. Place bottom edge of the camping spout against your perenium. Keep legs in upright, knees bent position or place them straight down on top of the urinal

Step three. Holding the edge firmly against the perenium, urinate. If in PEM, you may need to push down with abs or raise your hips.

Step four. Remove urinal, wipe with paper towel, dispose in bag next to bed.

Step five. Rest.

Waking up with ME

you will need:

• heart rate monitor

Time: allow 30mins to 3 hours

Step one. Lay very still with your eyes closed, breathing shallowly if in PEM. Wait for any dizziness or disorientation to pass. Remember that you are not living a dream life and are instead living in your bed with an illness

Step two. Mentally assess where your phone is and make a tentative movement to reach for it.

Step three. Rest and allow your body to relax through tachycardia.

Repeat step two and three until your phone is located near your face.

Step four. Grunt at anyone who approaches you, as speaking with worsen the tachycardia. Keep your eyes shielded from the light with a pillow.

Step five: open elite app and click morning readiness.

Step six. Lay still and relaxed for 2.5 minutes. Focus on your breath, but not too much. Shallow in breaths and extended outbreaths, or shallow in, quick out and hold, or normal breaths with a hold in between may help lower HR and raise HRV. Count in your head, until you forget you were counting. Watch the display but close your eyes if you get stresssd by the volatile or high heart rate.

Step seven. Rest. Notice that your resting Hr is now lower than your reading. repeat steps 1-6 until your heart rate is stable

Step eight. Assess the trend graph. If the HRV line is below the hr, it’s bad stress and you need to rest. If the HRV is sharply above the HR, it’s badly in recovery and you need to rest. Is the HRV is in a steady line above the HR, you’re doing great. Continue resting, or plan something extravagant like—

Having a drink

You will need

• cup

• Straw

• Heart rate monitor

• Filtered water (with minerals)

• Salt

• Honey optional

Time: allow 5-6 minutes

Step one. Open Sweetbeat or Heart graph (with tones) on your phone and place in a prominent position

Step two. Relax until your heart rate is close to resting

Step three. Place the cup in the crook of your armpit and the straw in your mouth

Step four. Have a sip and observe the heart rate response. (Reflux or PEM can exacerbate this, causing tachycardia). Breathe until the HR falls to within 5-10 beats of resting.

Step five. Take another sip.

Repeat until you have drunk the cup of water, or are too tired to continue.

Laying in bed

You will need:

• Pillows

• Cool blanket

• Warm blanket

• Hot blanket

• Foam padding

• Woolen overlay

• Dust mite filter

Step one. Lay on your front, side or back with your arms resting on the bed

Step two. Choose a blanket seemingly appropriate for the weather

Step three. Tuck your toes into the back of the opposite knee crook to warm them

Step four. Monitor heart rate to notify if/when you overheat with a low grade fever.

Step five. forget to monitor your temperature and start dwelling on your anxiously beating heart and sad feelings

Step six. Touch your torso or have someone else touch you and realise you are in fact overheating

Step five. Take temperature. See that it’s normal, despite your burning up head torso thighs and brain

Step six. Use your cold hands to warm up your hot torso and face. Change to the cool blanket. Apply cold packs if necessary.

Step seven: seek help warming your still cold feet with either healthy people skin, heat mat, or hot packs.

Step eight. Seek help rolling to a cooler part of the bed/a less sore part of your body.

Step nine. Repeat

Step ten. Become increasingly frustrated at why your body is not temperature regulating, wonder if you have an infection, resolve to find a new doctor, begin googling treatments for ME

Engaging with friends and family

You will need

• infinite patience

• Tact

• Resilience

• Doctors to back you up

• An exit strategy

• The word ‘no’

Step one. Agonise over how to answer the question ‘how are you’, be careful not to say you’re doing too well- as in a minute you may need to explain you are too sick to attend event/do the thing

Step two. Wait for response

Step three. As required, Calmly and quietly affirm that you do not have malaria or mercury poisoning, you are under the care of many specialists, the diagnosis is ME and there is no known treatment, that post-exertional malaise means exercise will not help you. Gesture towards your medical folder, offer the ME ICC criteria and/or primer if the person is particularly enthusiastic. If pushed reply that you need to rest and recover but ‘maybe tomorrow’ you can visit/go out into the sun/help with that thing they want you to do.

Step four. Crawl into fetal position and rest to recover- cry if necessary

Step five. rant in support group until you are able to regain a sense of reality and sanity

Step six. spend more time alone

Eating food

You will need:

• a short list of tolerated foods combined into different combinations

• A shallow, lightweight soup bowl

• A spoon

Step one. rest until you have an appetite

Step two. request food

Step three. get abruptly tired and lay in fetal position/nap/forget you had food until your food goes cold and/or you have reflux

Step four. get abruptly hungry. request food.

Step five. Repeat.

Going to the toilet

You will need:

• square padded toilet seat

• Someone to carry you (bad days) an electric wheelchair (good days) or low portaloo beside the bed

• Papertowel/toilet paper

• wet wipes

• Bin beside the toilet

Step one. Avoid all allergenic foods.

Step two. Rest extensively until your body can relax. Neck massages or back massages may assist

Step three. Assess the likelihood of a bowel motion. If 85%+, initiate toilet trip.

Step four. If being carried, relax your head and arms and attempt to move as little as possible. Otherwise wriggle across bed and shuffle butt first onto portaloo

Step five. sit on the toilet. Keep your elbows in to your sides and your hands in your lap. Put your heels to your butt and wait for your heart rate to drop back near resting. Do not at any point put your feet below the level of your butt. Try not to wee on your feet

Step six. Do a fart and a massive belch, realise it was gas, return to bed to rest.

Step seven. Repeat.

Having a conversation with ME

You will need:

• self restraint

• A heart rate monitor

• Someone kind who knows of your condition

• A quiet, moderate temperature, allergen free environment

• An exit strategy

Step one. Rest for 2-14 days in preparation

Step two. Keep your feet up to your chest with your knees in or legs crossed. Recline if possible

Step three. Place the heart rate monitor graph within vision or set watch to pacing alarm below 90bpm

Step four. Engage with the person you have decided is worth your spoons

Step five. Be mindful of moving your arms, laughing, or getting too excited. Monitor temperature, blood sugar, palpitations, level of tiredness/urge to cry.

Step six. Collapse in a heap: lay in the fetal position, monitor breathing and temperature until heart rate returns to resting.

Step seven. recover in 2-14 days.

Leaving the house

Step one. Forget about it.

Sent from my iPhone

How it feels

Sometimes if I pay attention to the touch, pressure, constant itching discomfort of the heart monitor strap around my chest, I want to rip it off, like the rising panic of getting your arms and head stuck in a piece of clothing (or maybe that’s just me, on both counts… and maybe on all counts which follow below, too).

When my pumpkin isn’t cooked properly, my whole being, living in my skin is so uncomfortable I know what ADHD must feel like, I want to be squeezed, I need to kick my legs and squirm and wriggle and bite the permeating low level pain away. But I need to stay still and calm.

When my carers don’t understand this illness despite 20 pages of explanations and instructions, like I am an alien, I slow burn implode. I want to appreciate and be grateful for help and I try to be gentle but the end result of wellmeaning but misguided attempts is I don’t want to continue living this life in this body.

When I am sleepy or stressed and people make short sharp noises, shutting a door, opening a packet, it feels like my skin is being zapped allover, electrocuted down my spine to my finger tips. And it comes unpredictably and I can’t control it and I can’t meet their expectations.

When people chat at me, I feel invisible, I cannot comprehend what they are thinking to act like that, the only explanation is that they cannot comprehend or even see me, or that they do not care for me at all, I feel like I am enduring well meaning—or habitual—torture.

[i read it written of a dream where all the words ever spoken floated above the dreamers head for her to peruse and she surmised that we should be mindful and not speak so casually for it is all written; I wish this was taken to heart and I was spoken to only as strictly necessary]

When I push my limits to complete a task, afterwards my brain goes silent and flatline, once the ringing stops; I stare at the wall and think and feel nothing but the heaviness, like I am dead but I don’t even mind, apart from the dull ache; at least I am still and quiet. Too tired even for discomfort; At least it has stopped.

When mosquitoes buzz in my room, the carer kills three and I slap two and then she leaves and I hear more and I watch them across the ceiling, back and forth… I feel the restriction then. rage and frustration of twenty one and a half months restriction unable to stand or sit or move or let go without punishment.

I throw a cushion at them, overexerting my shoulder muscles and spilling a jar of coconut oil onto the bed. The muscles still spasm an hour later as I lay on a towel on the oil and breathe in the smell of salicylates; I start to cry at these impossible parameters and momentarily despair, the sobs starts to choke, tears flow every which way across my face and it takes the edge off but my heart rate monitor dings louder and louder and I have to calm down; not allowed release.

My eyes become conjunctival, they sting and I painstakingly pull away discharge for days, if I forget and rub them it swells into cysts and swollen eye lids to apply hot compresses to.

No release.

I feel lonely and bored and frustrated. I feel caged and trapped and suffocated.

I feel suffocated by the dependence of being alone while needing help. I feel suffocated by strangers who don’t know me, don’t understand M.E. and don’t really listen… endlessly in my space [never alone, alone all the time]. I feel suffocated by the guilt that they try and understand and accomodate but this illness needs SO MUCH and they inevitably fail and hurt me, with scents and food and disruptions and missed messages. I feel suffocated by the requirements of my body and the demands of the world. I feel crushed by the grief of the babies I gave up and maybe will never have… and by the weight of treatment decisions, rocks and hard places with little guidance and inadequate tangible support; no safety net to catch me if I err.

I’m navigating a dark hell hole, at a loss myself except I’ve been here a while. I am not the lord of this terrain… yet I am required to shepherd those to whom it is invisible, those who walk in the light of functionality and family and social time and sex and baths and dancing and sunshine, but visit me here, in an attempt to bring solace or food or water or to take the shit away.

My survival and my escape depends on forging an understanding. How do you show someone what it’s like to live without living, in suspended animation, where each step forward is measured not by how much you gave and received and shared and experienced, but by how much you managed to be still and silent and alone and nothing, even to yourself? And where every misstep is mercilessly punished with the loss of hours, days, weeks of your life, and new depths of restriction, pain, and alienation. How can anyone possibly respect that enough?

To an extent, I don’t want to show them (and most of the time I don’t want to see it myself). The youth and health and beauty unrecognised, so innocent, contrasted against this heart-breaking loss and fragility. Depths of suffering too heavy for those who walk among the living.

And yet they see it, they must, and that takes me by surprise too, but I tell them it’s okay and not to worry and thank you for your help and please just text me instead of talking and don’t worry about the diarrhoea from the pumpkin.

While the days tick, tick, tick away.

Fibromyalgia vs ME/CFS

~70% of me/cfs patients have *comorbid* fibromyalgia. Some have fibro initially but go on to develop ME/CFS later. They are not, however, the same condition. Fibromyalgia is dominantly pain, whereas people can have ME/CFS without pain being a dominant symptom. An infection usually triggers ME/CFS, whereas fibromyalgia is usually related to trauma.

– Brain: Fibro (and conditions like depression) show overactivity in certain areas of the brain whereas CFS doesn’t and is dominantly low blood flow. Reduced midbrain and cortical blood flow may be found in both [link].

– Immunity:  They have different immune signatures. Flu-like Sore throats and swollen glands are a symptom of ME/CFS but not fibromyalgia.

– Nerves. Biopsy of small nerve fibres shows an increased density in fibromyalgia. (Equivalent studies have not been done for ME/CFS, this may in fact be a predisposing factor for later CFS). Small fibre peripheral neuropathy is being investigated in relation to both.

– Exercise: ME/CFS is worse from progressive exercise with PEM (brain fog, flu symptoms) with documented aerobic dysfunction which doesn’t improve as it should. Fibromyalgic well-being and endurance will usually improve with the same exercise regime.

– Antidepressants: Antidepressants help fibromyalgia. There is no proof of efficacy for ME/CFS.
– Depression is shown to worsen pain perception and coping, and catastrophising is an exacerbating factor in fibromyalgia. Depression is also common in ME/CFS but often follows the onset of PEM from pleasurable activities, rather than preceding it.

Diagnosis: Many fibromyalgia criteria are similar to ME/CFS with the exception of PEM. Earlier criteria omitted PEM and so may have resulted in some conflation.

– Treatment:  There are some biomarkers tests and even a vaccine which may have efficacy for fibromyalgia. Diagnosis by cytokines and chemokines (Prohealth), (healthrising) (lab) or skin biopsy (research) is developing in place of pressure point diagnosis. The medical equivalent for ME/CFS is the CPET which shows aerobic impairment and dysfunction, immune activation from exercise and lack of recovery or improvement from exercise.

Cytokine pattern: Test results are based upon a 1–100 scoring system, with fibromyalgia patients having scores higher than 50. With sensitivity for FM/a® approaching 93%, patients can rely on a high degree of accuracy.

– Substance P, a neurotransmitter responsible for the transmission of pain is elevated in the spinal cord in FM but not CFS

– RNaseL, a cellular antiviral enzyme is elevated in CFS but not in FM. This may account for pain vs PEM differences.

– Sympathetic dominance is found in ME/CFS, whereas nervous system sensitisation is emphasised in fibromyalgia, though both show disturbed Stage 4 sleep.

Notes:

– The similarities between ME/CFS and fibromyalgia are partially documented. Equivalent research is not always performed. Only recently a study was published showing orthostatic intolerance (POTS/NMH) is also common in fibromyalgia. SIBO was found in 100% of fibromyalgia patients but was not assessed in ME/CFS. Gut and metabolomic disturbances were found in ME/CFS but not assessed in fibromyalgia. Both disorders share similar comorbodities such as IBS and raynaud’s. Both show disturbances in cortisol suggesting suppression of the HPA.

[research] reduced serum or CSF serotonin levels; and suppression of growth hormone, somatomedin C, or IGF1

– authors such as [name] who promoted the ‘guafenesin protocol’ conflated CFS with fibro, and maintained that a cough medicine which affects the way calcium is managed within cells, causing it to be dumped, resulted in eventual clinical improvement after a period of exacerbation. This is consistent with Griffith universities recent research which relates SNP’s to calcium channel receptor issues throughout the body; they suggest magnesium may help. The clinical study on guafenesin, however, found no proof of efficacy and ME/CFS criteria were not considered.

– In the strictest sense of the term, fibromyalgia should be central nervous system dysfunction ONLY, in the absence of muscle knots and misalignments. This conflicts with ME/CFS or fibro patients who have muscle spasms as PEM crash symptom, misaligned hips and ribs, or muscle tightness (as suggested due to calcium overactivity). In this sense the diagnostic criteria is conflated and prevalence and research may not be accurate. Illness definition in ME/CFS is also conflated and research may not be accurate. Prevalence of ‘chronic fatigue’ (idiopathic) is 20%, prevalence of chronic fatigue syndrome is 2% and prevalence of ME/CFS is 0.2%. Prevalence of fibromyalgia is 6% according to labtest. Prevalence may also differ as ME/CFS requires exclusion of medical and psychiatric causes of fatigue.

– There is also a body of research focusing on ME/CFS & FM patients compared to pure CFS or pure FM (similarly to ME/CFS & IBS vs pure ME/CFS) with differences found between these groups also.

The most recent and comprehensive review ‘Evaluating the single syndrome hypothesis’ was published in 2013. ‘FM. By continuing to preserve the unique illness definitions of the two syndromes, clinicians will be able to better identify, understand and provide treatment for these individuals.’


Image: FM & CFS. Note the above differences for CFS by gender are likely not accurate.

See my other blogs on this topic:

– Brain scans in ME/CFS, fibromyalgia and mood disorders

– Differentiating ME/CFS from depression

– Fibromyalgia and CNSS

further discussion: Cort forum

Research into fibromyalgia summary

Griffith University

The Australian college has 4 million in funding and feel they are close to a breakthrough in marketing a biomarker for widespread use, and then treatment.

Of their findings, team said:

-TRPM3 receptors have been identified on these particular immune cells, not only in healthy people for the first time, but also have been shown to be significantly reduced in CFS/ME patients. These receptors are important as they move calcium inside the cell. Interestingly in this study, also a significant reduction of calcium inside these cells from CFS/ME patients.’ Novel identification and characterisation of Transient receptor potential melastatin 3 ion channels on Natural Killer cells and B lymphocytes: effects on cell signalling in Chronic fatigue syndrome/Myalgic encephalomyelitis patients

The findings regarding calcium dysfunction are interesting in relation to what many have found

  • In patient groups of both ME/CFS and fibromyalgia magnesium is usually well tolerated and brings symptomatic relief
  • Naturopaths have used magnesium extensively in patients with a stress as part of what is labelled ‘adrenal fatigue’ which has many cross overs eg sleep, gut and orthostatic dysfunction
  • Tietlebaum’s protocol for ‘fibromyalgia’ (which conflates CFS & fibro) says the issue is calcium signalling and being stuck in the cells, leaving the muscles in a perpetual state of activation, which exhausted them.
  • Update

  • NCNEDs publications continue: TRPM3 activity is impaired in CFS/ME patients suggesting changes in intracellular Ca2+ concentration, which may impact NK cellular functions. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients
  • Sleep: review

    CFS/ME is associated with impaired sleep homeostasis and basic sleep drive.

    the symptoms of CFS/ME are distinct from primary sleep disorders, the illness is more than a somatic expression of a sleep disorder or sleepiness- How significant are primary sleep disorders and sleepiness in the chronic fatigue syndrome? 2000

    primary sleep disorders do not influence the core symptoms of CFS/ME and therefore should be considered a comorbid condition. –Sleep apnea and psychological functioning in chronic fatigue syndrome. 2009

    subjective sleep quality measures and phasic alpha sleep are associated with pain sensitivity in FM –Sleep quality in patients with fibromyalgia using the Pittsburgh Sleep Quality Index

    sleep disturbance can be caused by but also -lead to reduced pain thresholds The effects of delta wave sleep interruption on pain thresholds and fibromyalgia-like symptoms in healthy subjects; correlations with insulin-like growth factor I

    CFS/ME patients with and without a psychiatric comorbidity have sleep disturbances. therefore they’re unlikely to be solely the result of underlying depression

    Review of clinical and psychobiological dimensions of the chronic fatigue syndrome: differentiation from depression and contribution of sleep dysfunctions 1999

    CFS/ME patients may have differential parasympathetic activity at sleep onset, which may contribute to delayed sleep latency.

    Reduced heart rate variability predicts poor sleep quality in a case-control study of chronic fatigue syndrome. 2010

    The above study found parameters of HRV during sleep were lower in patients with CFS, with reductions in vagal modulation of heart rate. Low HRV strongly predicted sleep quality-suggesting a pervasive state of nocturnal sympathetic hypervigilance in CFS.

    This may affect waking during REM: The relative frequency of REM to non-REM sleep transition is lower, resulting in a greater relative transition frequency of moving from both REM and stage I sleep to awake. [study below ‘dynamics…’ by Kishi, dys vid]

    theoretically these abnormalities could also influence extensive vivid dreaming

    The above study found Regression analyses have also demonstrated that HRV is the best predictor of subjective sleep quality in CFS/ME patients. [i use sweetbeat during sleep and find this tracks with symptoms, see related blog]

    NEW STUDY

    replicates ‘sleep quality and stability measured by CPC is poor in CFS/ME patients, with reduced high-frequency coupling and increased low-frequency coupling’. Cardiopulmonary coupling (CPC) is newish, used as a measure of sleep quality and stability based solely on the electrocardiogram (ECG) signal, uses heart rate and respiration

    Sleep architecture and sleep stability in chronic fatigue syndrome. 2011

    A number of studies have reported reduced time in slow wave sleep in CFS/ME patients relative to controls and between monozygotic twins. The cytokine systems are intimately involved with sleep regulation;

    ‘After acute infection with nonneurotropic agents, there are stereotypic changes in non-rapid-eye-movement sleep, particularly increased time spent in slow-wave sleep’ due to proinflammatory cytokines Links between the innate immune system and sleep 2005

    The relative frequency of REM to NREM transition is lower in CFS/ME, while there are significantly more transitions from REM and stage 1 sleep to wakefulness. Dynamics of sleep stage transitions in healthy humans and patients with chronic fatigue syndrome

    These effects are independent of depression and FM:

    CFS patients showed a higher microarousal index than controls. Anxiety, but not depression symptoms were more intense in the CFS group. The distribution of nonrapid eye movement sleep in CFS differs sizeably from what can be observed in a primary sleep disorder. High slow-wave sleep and low-light sleep: Chronic fatigue syndrome is not likely to be a primary sleep disorder

    CAR; Morning cortisol levels upon awakening, recognized as an indicator of the HPA response to stress, were attenuated in CFS/ME patients compared to healthy controls, with this difference most evident in females with CFS/ME. (Can test through Nutripath) Attenuated morning salivary cortisol concentrations in a population-based study of persons with chronic fatigue syndrome and well controls

    HRV metrics (Welltory)

    Part one: metrics

    • the sympathetic nervous system (SNS) shows stress and stress responsivity ‘mobilising potential’. This is described by low frequency (LF)

    • the parasympathetic system (PSNS) is relaxation and accumulation of energy, ‘recovery potential’. This is described by high frequency (HF).

    • the LF / HF ratio shows which part of the ANS dominates at the moment – sympathetic or  parasympathetic.

    – Very low frequency (VLF) component shows humoral regulation, an ancient process of controlling the body’s response through hormones and other substances released into the blood and lymphatic system. VLF dominance means that the ANS does not cope with too high and prolonged burden or illness, and the endocrine and central nervous system is compensating. Usually, young and healthy people have low VLF. VLF increases only in the stressful situations.

    – SDNN index shows how high are intervals between heartbeats. Usually, the higher the SDNN, the better is HRV.

    rMSSD parameter is calculated similar to HRV and describes changes in the PSNS. This is said to reflect whether you recovered during the night.

    Normal range 20-66.

    Welltory displays rMSSD, elitehrv displays HRV which is normalised.

    • Root Mean Square of Successive Differences (RMSSD) is the industry standard time domain measurement for detecting Autonomic Nervous System (specifically Parasympathetic) activity in short-term measurements (5 minutes or less). To calculate HRV, A natural log (ln) is applied to RMSSD. RMSSD does not chart in a linear fashion, so it can be difficult to conceptualize the magnitude of changes as it rises and falls. Therefore, most apps apply a natural log to produce a number that behaves in a more linearly distributed fashion. The ln(RMSSD) is expanded to generate a useful 0 to 100 score (elites log differs to sweetbeat’s). The ln(RMSSD) value typically ranges from 0 to 6.5.

    Total Power is the sum of the HF, LF, and VLF components. It shows whether you have the power to get a lot done today. When this is low, it’s better not to plan exertion.

    Notes:

    – HRV varies with circadian rhythm. In healthy people, LF was highest in the morning, HF was highest at night and LF/ HF was lowest at night (Study).

    – HF does not accurately mirror vagal effects on the heart when there are changes in respiratory frequency ie HF is modulated by breath rate (overview study)

    – A rise in HR always causes a drop in HRV

    – Diet may affect HRV (as well as BP). Insulin has vasodilatory properties and appears to induce sympathetic nervous system activity. Carbs may raise norepinephrine and muscle sympathetic nerve activity.

    – in healthy persons: BP, HRV and HF are lower 2hrs following a meal. HR and stroke volumes are higher following a meal. Study

    For a detailed overview of LF, HF and VLF, see HeartMath.

    PNN50 is a calculation of intervals that jump 50 milliseconds or more. Study

    The following metrics are derived from blood pressure:

    Kvas endurance coefficient shows whether your heart is ready for physical exercises.

    The Kerdo index is another indicator of changes in the ANS based on heart rate and blood pressure.

    Blood circulation efficiency (BCE) estimates the minute blood volume and indicates the degree of fatigue.

    Robinson’s index estimates the functional reserves of the cardiovascular system and shows your level of the physical health.

    Functional changes index indicates how well your body can adapt to the stress factors.

    Physical state coefficient estimates the overall norm for your age, height, and weight based on blood pressure.

    Part two: Welltory

    Heart rate variability was developed for astronauts (like the air oasis filter!). Increasingly it is being used as biofeedback in illnesses such as ME/CFS. It’s being used in current studies and the technology available to patients is slowly improving.

    Welltory is a new app available to chart HRV metrics. It can be used with a chest strap such as Polar h10 or via camera flash on the phone. Additional functionality is by subscription, for the Quantified Self Dashboard. Extended info can be accessed via desktop. Welltory can be used in combination with other apps and devices such as BP monitor.

    The app:

    – subscription is kinda expensive

    – doesn’t show HRV during reading so no biofeedback as elitehrv does

    – measurement goes 4-5 minutes

    – can key in blood pressure

    – can chart against metrics like air pressure if you have the right apps (I don’t)

    – includes raw data metrics

    – also uses its own ‘stress’ and ‘energy’ calculations

    – app charts variables against energy & stress calculations- is a little confusing, the metric listed second appears in front in the graph

    The app is based on the nervous system of a healthy person, so some of its interpretations may not be inline with ME/CFS experience. The algorithm does have a feedback function which adapts, but I’m yet to find how effective it is.

    https://app.welltory.com/share?token=21957af7d3d2b68dc55f09e8566a60b22f141ee7

    ~~~~

    Welltory provides detailed interpretation of HRV data, within the paradigm of a normally functioning nervous system. They use beat to beat intervals and blood pressure as a basis. Here’s an overview of the metrics and theory underlying their interpretations

    Stress: sympathetic nervous system, physiological stress levels

    Based on: average RR interval, the number of intervals, how much the intervals differ from one to the next, etc.

    Levels below 20% are considered good. Morning reading Over 40% is concerning.

    Regulated by norepinephrine, which makes the heart beat faster and shortens the intervals between heart beats.

    Energy: parasympathetic nervous system activity, recovery

    Based on: the number of RR intervals that vary by more than 50 ms.

    Values over 60% are considered good. Morning reading Below 40% is concerning.

    Regulated by acetylcholine, which makes the heart beat slower and increases the intervals between heart beats.

    Studies Here

    Confusingly, energy and stress are included in addition to sympathetic and parasympathetic activity measures. Presumably they are derivatives of the LF & HF.

    ~~~

    ‘The concept of allostasis emphasizes that the physiological systems within the body fluctuate to meet demands from external forces. This ability can be diminished by chronic activation of the sympathetic branch or chronic suppression of the parasympathetic branch of the autonomic nervous system caused by chronic stress or harmful social conditions.

    Decreased HRV could then be conceptualized as a lack of ability to respond by physiological variability and complexity, making the individual physiologically rigid and, therefore, more vulnerable. This is consistent with Porges’ proposal that a chronically depressed vagal tone would reflect poor homeostasis and a neurophysiological vulnerability to the deleterious effects of stress.’

    Study on anger and social isolation

    One study (link above) found:

    All, one at a time

    I still haven’t watched Unrest.

    Since I’ve been sick, I’ve been fighting to have doctors acknowledge me. Fighting for care and proper support. Fighting for social security. Fighting to have ‘ME/CFS’ taken seriously.

    Today my new GP didn’t hesitate or argue about whether I needed a disability sticker, he just gently told me he’d need to write on there that I’m not able to drive, and that it’s permanent.

    Driving was my biggest freedom and independence. Something I craved and fought for. I haven’t driven since June last year, when doing so ended in a crash I haven’t recovered from. But part of me still expects to be able to get up- if I really wanted to- and drive somewhere, if I really needed to go.

    This same part believes the people who seem to think that recovery will mainly be an act of will power. That I just need to ‘focus on wellness’. Or that ME/CFS isn’t a real illness, it’s just a combination of some unaddressed infections, leaky gut, environmental toxicity and trapped emotional trauma. Part of me hopes it’s just a simple solution that I- for whatever reason- have omitted to try.

    Since I’ve been sick, we haven’t had a permanent house or financial stability. My grief and loss has been under tight containment. As has my physical body. And now it bubbles over.

    We’ve had treatments I’ve been waiting until for stability to try, always with the distant possibility of recovery. Now the crashing reality of fragile hope, reactivity, endless variables, and confusion. More than all that- Frustration that even once I turn my full attention to it, it isn’t magically going to go away.

    Magnesium: Imbalances electrolytes. Zinc: Lowers iron. Iron: Feeds the staph infection. Argh.

    We haven’t weighed me but I doubt I’ve gained. My nutrient status is falling. If I try the sodium chromogylcate, maybe my belly will settle down. Then I might tolerate the ibergast, and the elemental shake food with balanced nutrients. To try them I’m waiting on a stability that never comes, a stability so fragile and unattainable as to make me crazy. And one which I threaten by trying anything at all. It feels like a high stakes game of risk, where I’m doomed if I do and doomed if I don’t. But maybe that’s just the post-doctors appointment PEM talking.

    My mum complained until I got tested for malaria. Part of me hoped it was positive, although logically that’s ridiculous. Secretly in my heart I pray this isn’t real. That ME/CFS is just some giant farce, a comediac misundstanding, and one day the jig will be up and it will go away. I want a differential diagnosis that explains it all and gives me my life back. Anxiety. PTSD. Burn out. Deconditioning. Pervasive refusal syndrome, I don’t care. Lactate dehydrogenase deficiency- odds are one in million, but I’ll take it.

    Denial. Bargaining. Anger. Sadness

    Grieve it all one at a time.

    Only with acceptance, can we move forward, and be brave enough to find answers grounded in reality.

    ~~~~