ME/CFS is discussed in this post within the context of 'medically unexplained symptoms' (MUS); I do *not* believe ME/CFS should be shoehorned into the MUS umbrella, in fact I am not a fan of the term MUS in any context. The Joint Commissioning Panel for Mental Health (JCPMH) in the UK, (a panel co-chaired by the Royal College of Psychiatrists and the Royal College of General Practitioners) is pushing for a broad gamut of diagnoses, including ME/CFS, to be subsumed into MUS (see here for a JCPMH publication on MUS). The result of this is that, for patients in the UK at least, ME/CFS will indubitably be considered a form of MUS by many healthcare professionals. Thus, my references to MUS in this blogpost simply reflect my experience (as a patient and therapist) and do not represent personal endorsement of current practice and policy.
I have often questioned how many so-called ‘medically unexplained symptoms’ (MUS) would actually transpire to be medically explained, if patients with MUS were treated in the same way as other patient groups, and granted investigations and referrals where indicated. It is a disconcerting truth that some patients deemed to have MUS are refused investigations and referrals, even for new and atypical symptoms, and even when there is a clear clinical rationale for such. This is of course largely owing to creeping biopsychosocial (BPS) hegemony, with BPS proponents arguing that healthcare professionals should not ‘collude’ with patients in their ‘dysfunctional’ or ‘aberrant’ illness beliefs by acquiescing to repeated requests for biomedical referrals.
Patients with MUS who believe their symptoms to be physical in origin are often labelled as having such aberrant illness beliefs; in fact, belief in a physical illness is often taken in clinical practice as part of the ‘proof’ that patients with MUS have primarily psychological issues (and therefore do not require investigations for physical disease). Unfalsifiable, circular reasoning is the forté of many BPS proponents, and is also a hallmark of pseudoscience. One of the obvious harms of this empirically unsubstantiated approach is that some patients may have underlying, potentially detectable and serious pathology that is either mimicking or adding to the presentation of their MUS-type diagnosis. In the field of ME/CFS, research has demonstrated concerning misdiagnosis rates in samples of patients referred to so-called ‘specialist’ ME/CFS clinics. Rather than considering such risk of misdiagnosis, BPS proponents prefer to focus on the potential harms of over-investigation; whilst over-investigation is a real phenomenon in medicine, I don’t think there’s any danger of most MUS patients ever being over-investigated.
In the UK, some BPS proponents have been busy encouraging clinicians to engage in re-attribution training, where GPs and other primary care healthcare professionals learn how to tell patients (who believe that their symptoms are physical) that their symptoms are actually psychosomatic. This way, the health service can save money on biomedical investigations, MUS patients being considered a drain on resources. Patients are instead offered psychological therapies such as cognitive behavioural therapy (CBT), or cognitive-behaviourally inspired psychoeducation. People with ME/CFS for example are currently offered graded exercise therapy (GET) and CBT, alongside psychoeducation around sleep and stress reduction (e.g. mindfulness techniques) at so called ‘specialist clinics’ within the NHS, despite a very controversial evidence base for said treatments (currently under NICE review). No matter what the purported evidence base, a glaring issue here is that, if the patient has a primarily physical condition, no amount of psychological or psychosocial interventions are going to cut it (at least, not in the absence of biomedical treatment). Little wonder then that people with illnesses such as ME/CFS and other ‘contested’ (poorly treated, poorly understood or even relatively well understood and highly politicised) illnesses have described themselves as being left to rot.
I will use myself as a case in point. My multitude of symptoms started in very early childhood, accompanied by recurrent viral infections, and my health has continued to deteriorate throughout my adolescence, young adulthood and now into mid-adulthood. Along with the plethora of symptoms often associated with viral and post-viral states, an interesting observation was being highly flexible from a very young age, with cracking joints that would occasionally subluxate, and cracking in my neck on turning the head. I am also very tall, noticeably more so than my parents, with long bony limbs and fingers, flat feet and sunken breastbone. At first, my symptoms (see below for a more or less full list) were labelled ‘growing pains’, then they were diagnosed as ME/CFS in late adolescence (after further infections – cracking joints and the above-mentioned body type are not indicative of ME/CFS). Despite the fact that the severity of my symptoms is constantly increasing, and despite the fact that some of my symptoms are not ‘ME/CFS typical’, there has been an almost systematic refusal of GPs to investigate beyond a few blood tests and an ECG. On one occasion, I was diagnosed with a mixed anxiety and depressive disorder by a GP – without being informed of the said diagnosis: I only know this because I requested all my medical records, which have been quite eye-opening. I have repeatedly asked for referrals across a number of specialities, in particular neurological, rheumatological and sleep clinic referrals; all these requests have (for decades) been refused with the reasoning that I have a condition that will respond to psychosocial interventions. Every symptom is ascribed by healthcare professionals either to ME/CFS or to a broader umbrella of MUS - and thus, according to NHS philosophy, largely to somatisation.
The symptoms that I have been reporting, mostly for over thirty years, are listed below in clusters that make most sense to me (many symptoms implicate more than one body system and so the divisions are a little arbitrary). I cluster them to try to make them less overwhelming for me to remember when I speak to a healthcare professional. I also do this so that I can report symptoms per cluster when attempting to give a broad overview of my symptoms, as opposed to reeling off scores of discrete symptoms which I appreciate a GP does not have time for and cannot assimilate in one consultation. Saying that, I usually find I am interrupted after a few seconds so I am rarely able to convey even a fraction of what I want to. This is unsurprising: a number of studies suggest that healthcare professionals interrupt patients after a mere matter of seconds, losing precious clinical data (patient narrative) in the process. Further, some qualitative research suggests that GPs might interrupt and take control of a consultation with MUS patients sooner than they do with other patient groups. I have, however, repeatedly communicated all these symptoms to healthcare professionals, verbally and in writing, at various points over my clinical history - to no avail.
· Neuroendocrine
Thermoregulatory dysfunction (day and night sweats, painful sensitivity to temperature changes), chills, dizziness, nausea, excessive thirst, hypersensitivity to light and sound, fainting, muscle weakness, postural tremors. Low BP and low body temperature (clinical signs not symptoms, but pertinent to mention). All manner of paraesthesia (numbness, tingling, burning, electric shock-like sensations, localised hot and cold sensations without corresponding external stimuli). Orthostatic intolerance. Diagnosed with various forms of dysautonomia (POTS and neurocardiogenic syncope).
· Cardiovascular (and more recently respiratory)
Heart palpitations (ventricular ectopics, sudden tachycardia often but not always on standing), shortness of breath, leg cramps, bulging veins (some are varicose, other veins suddenly bulge up and can be painful). Very poor circulation (white, blue-ish and numb or tingling extremities), swelling of lower limbs. Abdominal pulse when lying (usually a normal finding) and when standing (not so normal). More recently: more pronounced wheezing, chest, lung and rib pain, difficulty drawing breath.
· Immunological
Sensitivity to many substances: household products, make-up, toiletries, jewellery, most clothing (unless super-soft fleece or viscose), many foodstuffs, alcohol. Raised skin reactions from light scratches (dermatographia). Chronic urticaria. Constant flu-like symptoms (sore throat, congestion, headaches, muscle weakness etc). Painful lymph nodes. Itchy eyes and nose, sudden onset eyes and nose streaming.
· Gastro-intestinal
Painful distension, cramping, gastritis-like symptoms (stabbing and burning pain, sensation of heaviness and fullness of the stomach), stabbing intestinal pain, constipation and diarrhoea. Very painful bowel movements, not infrequently with bleeding. Bowel pain for me is particularly marked around the rectal and sigmoid regions, and the ileo-caecal valve area. Painful and audible borborygmi. Swelling and lumps along the lower tract (I am quite thin so can feel my colon through my skin) which are painful on palpation. Acute gastroenteritis-like episodes every few weeks: typically a few days of such severe pain that I am virtually paralysed and vacillate between screaming into a pillow (so as not to alert the neighbours!) and becoming delirious. Diagnoses of IBS, indeterminate colitis, gastroparesis and SIBO (small intestinal bacterial overgrowth); most diagnoses were made by private medical doctors due to NHS inability or unwillingness to refer.
· Gynaecological and genito-urinary
Severe dysmenorrhea and menorrhagia, so severe that even before I became predominantly housebound I could not leave the house for a couple of days each month. Blood clotting. Spotting in between periods. Tendency towards both thrush and UTIs. Urinary frequency and urgency, with severe bladder pain if I have to hold it. Nocturia, dysuria. I was diagnosed with premature menopause aged 24, after a 7-week period of bleeding and then 18 months or so without periods. (The periods then returned after seeing a medical herbalist – which may be a coincidence, but I suspect not).
· Cognitive
Poor working memory which impacts on short-term memory tasks, selective attention (focused concentration) and divided attention (multi-tasking), word-finding difficulties (dysnomia) and general difficulty organising thoughts. Increasingly a temporary inability to recognise familiar objects (visual agnosia). Difficulty making decisions, especially with limited time. Slowed information processing speed: notably problematical when trying to have a conversation, and especially in groups, but also increasingly slow reading speed. Temporarily forgetting how to do routine tasks. Impaired speech production (see cranio-cervical cluster).
· Sleep
Over 25 years of severe insomnia. Four hours of sleep in one night would be a good night for me, and completely sleepless nights are not uncommon. Increasingly I am going two or even three nights without any sleep whatsoever, at which point my body temperature has usually dropped further and I am hallucinating from sleep deprivation. The sleep I do get is not at all refreshing and I wake frequently throughout the night, not infrequently choking or gasping for air (I suspect this is central sleep apnoea). Sometimes (usually on the brink of sleep or waking) I am aware that I have ‘forgotten’ how to breathe, and it feels as if I have to engage my prefrontal cortex to start breathing again.
· Widespread pain
Constant, body-wide, extreme pain: muscle pain, joint pain, neuralgia, headache (diffuse, stabbing & pressure pains in the frontal, parietal, temporal and occipital regions), pain around the orbits, within and behind the eyes, neck pain. Extreme visceral pain (kidneys, stomach and intestines, liver to a lesser extent). Additionally, an extreme sense of being ‘poisoned’: having had sepsis on more than one occasion, this sense of being poisoned is of the exact same nature as my experience of sepsis.
· Cranio-cervical
Extreme pain the upper cervical and occipital regions alongside clicking every time I moved my neck. A feeling of ‘bobble head’ (I cannot find any way of sitting or lying that is comfortable for my neck, and it feels very unsupported by my neck). Visual disturbances such as diplopia, visual spots and blurred vision are all exacerbated by moving the head. Increasing loss of depth perception. Loss of visual acuity, increasing loss of visual accommodation (I can very rarely focus on something so that my vision is clear, even for just a few seconds, and this is especially difficult when the object is moving or when shifting focus from one object to another). Tinnitus and popping in the ears. Altered sense of taste (usually metallic) and smell, dry mouth alternates with hypersalivation, excessive phlegm. Marked ataxia: unsteady gait and clumsiness, walking into things (when able to walk), tripping and falling over, dropping things, feeling unsteady on my feet, fine motor control issues, micrographia (and difficulty holding a pen), slurred speech, stuttering, increasing dysphagia and choking. Recurrent, prolonged and painful hiccups. Transient lapses in consciousness – like fainting, but much shorter and without falls.
· Migraines
Most likely linked to cranio-cervical issues, although a very dominant symptom. Pounding, whooshing, feeling extreme of pressure within the head and behind the eyes (as if my head is going explode) - with tinnitus and loss of vision. Can be frontal, temporal, parietal or occipital – or a combination.
· Musculoskeletal
Myalgia and arthralgia – severe and constant. Clicking, loose joints - ankles, knees, wrists, elbows, hips, shoulders and jaw are the main joints affected here for me. I have also been diagnosed with TMJ (temporomandibular joint) syndrome. ‘Bone pain’ (many doctors have laughed at me when I have used this term). Frequent sprains with significant and easy bruising, poor muscle tone. Diagnosed osteopenia.
· Dermatological / integumentary
‘Stretch’ marks (striae) on knees and hips (not associated with weight loss or gain), symptomatic ‘lumpy’ and bulging veins, recurrent mouth blisters, piezogenic pedal papules (visible and palpable rice crispies on the heels), significant hair loss and hair thinning, urticaria, psoriasis and other non-specific flaking, peeling, dry and itchy skin.
· Exhaustion and post-exertional exacerbation of symptoms
I barely recognise the post-exertional nature of my symptoms anymore (post-exertional exhaustion or ‘malaise’ being a hallmark of ME/CFS) – largely because I am predominantly bedbound and cannot engage in any significant activity beyond typing (a very slow process). Getting out of bed, getting up and down the stairs increase my symptoms but I now find this is immediate and not delayed by a couple of days.
I don’t think I’ve missed any symptoms, but it’s surprisingly easy to do when you’ve been left to live with such a plethora of overwhelming symptoms for decades. I could add trauma from medical neglect and gaslighting to the list, but this would be the subject of another blog.
I believe that some of these symptoms (ataxia cluster plus migraines with loss of vision) are a red flag for referral, yet I have had to beg and plead the NHS for decades for a neurological referral, which I have recently been granted for the first time.
What is also interesting to me from this huge list of symptoms (I counted well over 100 discrete symptoms across the various clusters and I could further sub-categorise some of these symptoms) is that many are glaringly similar to Long Covid symptoms at the more complex and severe end of the spectrum. To be clear, I am talking symptoms here and not insinuating anything about underlying pathology, but nonetheless I find the similarities interesting. I think this overwhelming plethora of symptoms really highlights how so many people (including academics and healthcare professionals) routinely downplay the severity and multi-system nature of ME/CFS, and this has been particularly apparent in the way some patients and experts are comparing and contrasting Long Covid and ME/CFS.
Saying that, not all of these symptoms are typical ME/CFS, and I think that there is a very good chance that I have undiagnosed co-morbidities. My money (if I had any after spending it all on private healthcare) is on cranio-cervical abnormality such as Chiari and cranio-cervical instability with an underlying heritable connective tissue disorder (EDS or Marfan). I also suspect mast cell activation syndrome (MCAS). Ironically, there’s also a good chance I had Covid-19 back in March (my GP shares my suspicion) which has left me with a few additional pulmonary symptoms as listed above; however, these symptoms are simply another layer upon decades of suffering and I have far greater disability owing to pre-existing issues.
Persuading the NHS to investigate these pre-existing issues is a work in progress. That’s an understatement – it is a constant, overwhelming and soul-destroying fight for the least crumb of care (readily afforded to most other patient groups, many of whom have better quality of life) and for validation as fully fledged human being. It remains to be seen for me how many of my so-called ‘medically unexplained symptoms’ are actually unexplained; if I survive long enough to receive investigations and obtain the results, I suspect my symptoms will turn out to be medically explained after all.