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.


– 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

Moral to the story 

Hard learned life lessons

If you don’t feel well, if you need high dose vit c, adrenal herbs, magnesium and zinc just to function, and if you have to sit down in the shower, you’re probably sick, no matter what the doctor says. Don’t listen if someone tells you it’s just in your head
don’t accept a dismissal, get a second opinion if it doesn’t feel right. If you feel exhausted, you probably are, even if other people think you’re ‘fine’.

Don’t live in a shipping container with extreme temperatures and heavy metals, or by a freeway, or opposite a power station, or near a metal smelter, or in a 400 y/o crumbly mouldy church, or anywhere else that bothers you. Remember to first stand up for yourself and fight for what you know you need. Trust what your gut says and your first impression.

Don’t let other people dictate your life path, especially not people who are unconscious in their decision making. Don’t accept excuses. Speak your anger and your boundaries. If you decide to use natural fertility charting and your boyfriend breaks your phone, force him to buy a new one immediately so you don’t lose data.

Don’t get the HPV vaccine.

Above all remember you have the answers within you, you’re strong enough to handle whatever happens,

so have faith and stay calm. Whatever happens, it will pass.

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.

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]


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

Overview: 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.

– 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.


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 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.

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.


‘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

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.


New BMJ guidelines

Although not perfect, these new guidelines represent a shifting tide away from NICE CBT & GET ridiculousness. Read the full document here. (Note this was issued in July and updated in nov 2017 to remove peter smiths name)

Some highlights:

‘The chronic disability leads to a sedentary lifestyle that may foster deconditioning of muscular, cardiovascular, and autonomic nervous systems. This provides the rationale for supervised, very low impact exercise if a suitable, well-tolerated programme can be individualised for each patient. However, exercise may be counterproductive in severe and/or bedridden CFS because the treatment may induce post-exertional malaise (PEM) and prolonged exercise-induced exacerbations. Mandated exercise programmes with predetermined goals cannot be endorsed because of their potential to harm patients whose primary problem is exercise-induced loss of function.’

‘Exercise may be beneficial for recovery of athletes, healthy individuals, cardiac patients, and others who may experience temporary immobility, but it is not clear whether patients with CFS respond in the same way’…
‘This highly generalised view and exercise prescription may not apply to the theories of metabolomics dysfunction and post-exertional malaise in CFS’… ‘What appears to be deconditioning may in fact represent the inability to generate adequate ATP for muscular work,and intolerance of exercise-induced acidosis as the diagnostic PEM epitomises’.

GET is recommended for mild fatigue only: ‘with mild fatigue: consider individualised exercise program’.

‘CBT may help in dealing with a new diagnosis of CFS, improve coping strategies, and assist with rehabilitation…
‘to take advantage of periods during the day where fatigue is felt the least…
‘However, the prospect that CBT can change the illness beliefs of a patient, and that graded activity can reverse or cure CFS, is not supported by post-intervention outcome data. Furthermore, in routine medical practice CBT has not yielded clinically significant long-term benefits in CFS.’

‘Non-adherence with prescribed exercise protocols may indicate that the protocol is too aggressive for the patient. Patients should be provided time to recover between each exercise session. Imposing strict adherence to a uniform exercise regimen will generally not be tolerated by patients with CFS. Other factors contributing to non-adherence include severe fatigue, pain, difficulties in travelling to the physician, and severity of PEM following visits to the physician’…
‘Family, financial, and other conflicts may interfere with the physician-patient relationship. Sleep disruption with reversal of day-night cycles may confound patient travel plans and appointments. Furthermore, concomitant problems such as IBS with uncontrolled explosive diarrhoea can be an embarrassment that keeps the patient housebound. Social withdrawal with depression should be addressed, and all such patients asked about suicidal ideation’…
‘Patients with severe CFS may be bed-ridden and require home visits and in-home therapy sessions because severe pain and discomfort will prevent them from travelling. Severe CFS represents about 5% to 10% of cases. It is not known if this group represents a separate disease or aetiology, or is the extreme end of a continuous distribution of CFS severity.’

‘The presence of inflammation in CFS pathology may contribute to inflammatory dysaffective disorders (IDD) that will require a reassessment of potential treatment options.’
– This is not discussed further and google pulls up little information. Theoretically, given our recent understanding that inflammation can be associated with depression, this could be saying that depression isn’t causative or comorbid but is in fact secondary to the disease process itself.

‘The focus of treatment should be orientated toward symptom management and functional improvement, and away from repeated, extensive diagnostic procedures, or ongoing referrals to additional specialists.’
– This is counterproductive for evidence gathering for disability.

The review recommends use of the Canadian consensus criteria (CCC) and dropping the oxford criteria and studies which were based on it.
‘It is inappropriate to use the 1991 Oxford criteria of fatigue as an alternative for CFS because the Oxford criteria are based on ‘mild fatigue’, do not require PEM, and allow inclusion of chronic idiopathic fatigue, depression, and other fatiguing conditions. Up to 30.5% of the population have chronic fatigue and would meet Oxford criteria for study inclusion. Studies that used the Oxford criteria are not representative of the more severe and restricted definitions of CFS that the CDC, Canadian Consensus, or SEID criteria define. Exercise and cognitive behavioural therapy studies that used the Oxford criteria for study inclusion are biased and misleading because people with true CFS are underrepresented, with excessive recruitment of people with chronic idiopathic fatigue and depression who are known to respond well to these modalities.’

‘Myalgic encephalomyelitis (ME) is more strictly defined than CFS. ME is defined by: disabling fatigue; post-exertional malaise; sleep, pain, cognitive and autonomic dysfunction; and chemical irritant sensitivity.’

Regarding ‘false illness beliefs’ (on which PACE trial based):
‘The biopsychosocial model of CFS and its treatment with CBT has been adopted by many governmental organisations with the aims of eliminating many presumed psychogenic and socially induced factors that maintain illness behaviours. The literature does not justify the biopsychosocial model of CFS when studies are limited to CFS patients with moderate to severe fatigue, and PEM in accordance with the Centers for Disease Control and Prevention (CDC) and Canadian Consensus Criteria.’

‘Chronic pelvic pain, vulvodynia, interstitial cystitis, IBS, and other functional somatic syndromes should be treated as significant components of the CFS panoply, with appropriate diagnosis and treatment.’
– Ridiculous that IBS would still be listed as ‘somatic’.

‘There is currently no evidence showing one drug regimen to be more effective than another. Choice of drug should be based on the side-effect profile of the drug and the patient’s initial response to treatment. Some patients have hypersensitivity to medication side effects.’

‘Metabolomics dysfunction and beneficial effects of rituximab provide new insights into the pathophysiological mechanisms of CFS. These studies of biological dysfunction suggest that CFS does not overlap with chronic idiopathic fatigue or depression.’

The review also includes some information about differential diagnoses which may present as ME/CFS, for example, Major depression: ‘Diagnosis is clinical but the affective dysfunction does not follow an infection, and is not typically associated with new onset of pain, migraine, irritable bowel, or autonomic dysfunction. It is generally improved by exercise instead of exhibiting post-exertional malaise and exhaustion.’

Note: The review at times seems to be presenting two contradictory views at once, presumably main peer-reviewer Peter White (involved with PACE) contributed the pro CBT & GET sentences which are not in alignment with the conclusions. ‘Disclosures: PDW does paid and voluntary work for the UK government and a reinsurance company’.

LP, attachment & the placebo effect 

Recent research by prominent  biopsychosocial researchers Crawley et al is prompting furious backlash amongst patients arguing for better care and the validity of ME/CFS. Some patients have posted about the ‘lightening process’ saying ”Don’t beckon lightning and invite it in for tea; it will burn your house to the ground with you inside until you’re nothing but ashes.’ It certainly seems true that the expectation to exercise and ‘push through’ is responsible for vast reported harm by patients.

What may be equally as important to patient outcomes is the presence or absence of true support, a feeling of safety and security, emotionally and biologically, at the individual, familial and societal levels. This is rarely the ME/CFS patient experience. 

Researcher and author Lissa Rankin talks about support as a crucial element to initiate self-healing, with physical health the most fragile element which is dependant on more than good diet and exercise. 

Relationships matter to health. Strong social network reduces heart disease. Married’s are twice as likely to be long-lived. I’ve written at length on the aetiology of relationship dysfunction stemming from the inability to form secure attachments, and theoretically this could be extended to a larger sense of societal and cultural safety, such as (for example) not being expected to work when it causes suffering and worsening, or to not be dismissed, blamed, ridiculed or otherwise abused by the medical establishment. 

‘Stephen Porges, Ph.D., a pioneer in the field of neuroscience and one of the world’s leading experts on the autonomic nervous system, confirms that we have an imperative for safety deeply wired into our minds and bodies.
Porges’ Polyvagal Theory describes how our autonomic nervous system mediates safety, trust, and intimacy through a subsystem he calls the social engagement system. Our brain is constantly detecting through our senses whether we are in a situation that is safe, dangerous, or life threatening’

~The Gottman Institute

Lissa rankin talks about loneliness, overwork, lack of spirituality or negative attitudes as affecting physical health. All of this is perceived as the brain and communicated via hormones and neurotransmitters as a threat, as something wrong. The amygdala turns on hypothalamus, to both the pituitary and the adrenals for cortisol, norepinephrine & epinephrine for a sympathetic (mal)adaptive stress response. Relaxation from a sense of safety, on the other hand, triggers oxytocin, dopamine, nitric oxide, endorphins—which are natural, healing, self repair mechanisms. Meditation, creativity, massage, yoga, laughter, sex and time with animals can trigger this response. 

If LP is working for some ME/CFS patients, this is likely (apart from issues with overdiagnosis) to be due to a placebo affect triggering the parasympathetic system response described above. What is most problematic however, is when this is used in a manipulative fashion, for example, to reduce costs for insurance companies, or is abusive as it is accompanied by denial of the existence of ME/CFS as a biological illness, dismissal of patients realities (gaslighting) or used as a justification for the denial of medical and social support (neglect). In this context, it is not safe.

As with any serious and incurable illness, spontaneous remission is possible, and is proof that nature is better than all of men’s medical knowledge and technology—but this cannot just be expected of patients, especially in a hostile environment where they are unsupported by doctors, policy makers and society at large. It’s one thing to empower and support patients to heal themselves, it’s another entirely to demand and expect it while denying rest, medical care and social security.

‘I believe that just as there are no incurable illnesses, there are no incurable systems. But it’s gonna take all of us, needing to open our hearts and our minds, and bring care back to healthcare.’ 

~Lissa Rankin.

The black loom

When we as a community say ‘this illness is biological’ or ‘CFS is not psychological’ or when we argue against theories of ‘MUPS’ or ‘somatisation’,

We are fighting for the right to be treated with kindness and compassion, to be given appropriate medical and other support, and to not be blamed. More than that though, what we are really saying is that we don’t agree we have the control being attributed to us. That if this debilitating disease state was ‘psychological’, we would do whatever we could to sort it out just to end the relentless suffering. 
The real issue is this Cartesian dualism, the concept of mind and matter as separate, which relies upon a fantastical conception of the mind as some kind of floating omnipotent entity entirely separate from the body. (It also relies on a denial of the impact of environment, past experiences, and cultural pressures on physical health and emotional wellbeing). Such a mind is endowed with the complete capacity for free will, something which is not possible within the realms of science. 

Logically this is contradictory: if we have total or even partial free will, which allows us to control our physiology with our minds, where does that leave the medical establishment? What is the point of the whole thing? And how is it even possible for a mind to function within a brain, but discrete from its biological realities anyway? At best it is a cause and effect program of infinite intricacy, much of which is created by genetics, in the womb and first 18 months of life.

When we say of any illness that it’s ‘just psychological’, we are banishing it from the realms of scientific measurement (and therefore medical assistance) and making the individual’s suffering entirely their responsibility, their problem to fix, their inadequacy and their mistake.

This is very convenient, not just to underfunded social services or medical facilities (liberalisation does not support those who cannot pay to play), but also to highly paid specialists for whom the problem outstrips their understanding and capacity. Rather than say ‘medicine doesn’t know, we can’t help, we’re sorry, here’s your $350 back’, they say ‘you’re somatising, you’re food adverse, you’re exaggerating, if you just exercise more you’d be fine’. 

Rather than the physicians sitting with this inadequacy, the patients (the ones already suffering) do. The end result is a deep sense of failure, shame, confusion and frustration.


Yesterday, after overheating outside, turning blue inside, and using my arms more than I can safely do, I found myself very car sick. As we drove from the house we were leaving to where we would be staying, wave after wave of nausea washed over me. I found myself thinking ‘is this nausea caused by stress? What can I think about that will calm my body?’ I tried distracting myself, closing my eyes and meditating, focussing on counting, taking deep breaths, looking out the window at a distant point… and then I filled the hood of my fleecey jumper with projectile vomit.

I don’t get car sick and I definitely don’t puke—except when I ‘overdo it’ and trigger ME symptoms, the mechanism of which is mostly unknown. In this case, stressful thoughts may or may not have been the straw that broke the camels back, due to an intolerably high allostatic load which left no room for human error (or human emotions), but ultimately I just desperately wanted a sense of control over what can be tortuous (and seemingly unending) discomfort. 

I fall into the trap of a dualistic approach when all physical means fail me. It’s easier to believe I can somehow fix this illness with my mind, then it is to sit with the sense of hopelessness that comes from just NOT KNOWING what is wrong, how to possibly make it better, or how to stop it happening again.
There is much unseen beyond the comprehension of the intellect. If anything, it’s not just ‘body and mind’, but mind body and SPIRIT. If the mind is real (lol), then the spirit is more real. As a third year psych student, I found myself in complete crisis after I realised that psychology could only be a science if the mind is a cause and effect machine—which leaves no room for free will, spontaneous change, spirit, or revelation which stems from the interconnectedness beyond the reach of our logical ‘mind’. Ultimately, I suspect there is a reality which will always remain beyond the capacity of measurement, due to the infinite variables. And this may be directly impacted by prayer, or reiki, or other woo woo, ra ra. 

It’s possible that we create disease with our thought patterns, habits, and toxic programming stemming from adapting to a dysfunctional world, or from childhood trauma or neglect. We have different vulnerabilities which show up as gout, migraines, or leukaemia. The effect of toxic environments and toxic cultures is not discrete and saved only for those of us with ‘medically unexplained illness’. The ability to manage symptoms by exercising extraordinary restraint, diligence and spiritual fucking awakening is also not unique to us, and neither is the failure to do so. 

If we didn’t have a known aetiology for cancer, biopsy to examine it, and chemo to treat it, we’d be telling cancer patients they need to stress less, eat better, micromanage their physical environments and time and exertion and nutrient intake. We’d be telling them that CBT was the only treatment and they better do it (even if it achieved little but wasting their time and money), and if they didn’t get better we’d leave them to their own devices. Our illness is only our problem to bear the weight of alone until science (and therefore medicine) can achieve dominance enough to confidently assume responsibility—and sell us a medication to match. Even if that medication comes with side effects and causes iatrogenic disease. Even if the knowledge doesn’t lead to vibrant health. Even if meds only bandaid and superficially alleviate the symptoms of underlying issues, which actually stem from generations of living in discord to what is healthy for human beings—caused by adulterated food, decimation of and war with the microbiome, disconnection from our communities, and a lack of entitlement to food, water, and a chunk of land to sleep on. Problems which take a lifetime or more to remedy…. or perhaps are just part of suffering as an inevitable component of the human condition. Not be a pleasant tone to end on, but possibly true; I wish this meandering train of thought had lead somewhere more uplifting.

‘And when the black thread breaks, the weaver shall look into the whole cloth, and he shall examine the loom also’. 

~Kahlil Gibran

We are banished from the (cold) embrace of modern medicine for the very reasons it is flawed, inadequate, and ultimately failing humanity as whole. It’s possible ME/CFS may be a keystone illness, one which when we understand will unravel the whole cloth, and lead to deep and systemic change. 

We can only hope.

‘The phrase “it’s all in the mind” suggests that all we need do is change it. Change our mind and the problem dissolves. But such a view of mental phenomena is puerile. Our minds are not sovereign over themselves in these things. And the quicker we ditch that stale and exhausted canard the better.’

BMJ Review