NHS webpages continue to spread misinformation on ME/CFS
*Note: for anybody who does not or cannot read to the end of this post, a number of reliable sources of information on ME/CFS exist. For example, the Open Medicine Foundation have a great set of resources: the OMF also gives an overview of the main case definitions for ME/CFS. I personally prefer the ICC criteria which delineate an illness a far cry from that described on NHS webpages.
Since CV19 reared its ugly head, and discourse around ME/CFS has emerged a little more from the marginalised shadows, I have been disappointed (but not surprised) at the amount of misinformed, clinically and scientifically inaccurate nonsense that is being disseminated about ME/CFS. I suspect that some of this comes from well-intentioned people (general public, bloggers, journalists etc.) looking up what they reasonably think is a trustworthy source of information (NHS Digital pages) and then taking this as gospel. The Science Media Centre will doubtless be playing a significant role here too with journalists, but for now I will focus on the NHS public-facing information.
What particularly concerns me here is that, with at least a sub-set of Long Covid patients likely to go on to be diagnosed with ME/CFS, such patients will indubitably also refer to NHS information on ME/CFS to look for differences and similarities relative to their experience of Long Covid. Given that NHS information is not only inaccurate but also massively downplays the severity and multi-system nature of ME/CFS, it could be expected that Long Covid patients would seek to separate their diagnosis and experience from ME/CFS (erroneously considering ME/CFS to be more or less synonymous with post-viral or chronic fatigue). In some cases it may well be that Long Covid is different to ME/CFS, with the caveat that ME/CFS as a clinical entity represents a hugely heterogeneous population of patients, some of whom get no biomed investigations past routine bloods - so we are comparing two largely unknown quantities. However, social media narratives suggest that, in some cases at least, stigma around ME/CFS is increasing as people with Long Covid are considered to have a very different (inference - more serious) condition that should be treated through a separate set of clinical protocols backed up by separate research. Whilst of course CV19 specific research is crucial, taking research and clinical learning from ME/CFS out of the picture risks doing harm to both patient groups.
I do not have the energy or function to go through every inaccuracy and inconsistency on these NHS (mis)information pages so I am limiting it to addressing the following NHS statements. I have raised this with the NHS through a number of channels and am yet to receive a response.
1) “Most people with CFS get better over time”
This is untrue – unless perhaps we are using Oxford Criteria to operationalise ME/CFS, as per the agenda of a few highly influential psychiatrists and psychologists. Perhaps the NHS is drawing upon Oxford for this particular piece of misinformation, given that it uses the term ‘CFS’ in this instance as opposed to ME/CFS, CFS/ME or ME (different terms carry different connotations). The NHS should know however that the (almost) universal consensus of scientists in this field is that the Oxford Case Definition needs to be retired with immediate effect. (The NHS then goes on to apparently draw on CDC/Fukuda criteria – which do not even begin to capture the illness experience for severely affected patients – but their cherry picking of different case definitions for whatever point they want to make just confuses the issue even more).
As with all aspects of ME/CFS, prognosis is difficult to determine: highly heterogeneous population, differing case definitions in research, biased research(ers), the fact that the most severely affected people with ME/CFS are typically excluded from research. However, one systematic review* found that median full recovery rate (across 14 studies) was 5%. Why the NHS fails to draw on such research, I’m not clear, but what is clear is that 5% is a long way from ‘most people’.
*Cairns, R., & Hotopf, M. (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational Medicine (Oxford, England), 55(1), 20–31.
2) “The main symptom of CFS/ME is feeling extremely tired and generally unwell. In addition, people with CFS/ME may have other symptoms …”
Not everybody with ME/CFS considers extreme tiredness their primary symptom. Indeed, ‘tiredness’ does not even begin to convey the lived experience of patients, the contextual factors surrounding fatigue or potential underlying pathophysiology. Most experts in the field of ME/CFS use the term post-exertional malaise or post-exertional neuroimmune exhaustion to describe this experience – very different than tiredness. Some people with ME/CFS consider their constant, extreme pain, or decades of insomnia, or dysautonomia (etc etc) to be their worse symptom / symptom cluster. Some people with ME/CFS state that they do not have what they consider to be ‘tiredness’ or ‘fatigue’, yet again suggesting that the system is not taking patient narrative seriously.
Furthermore, people with ME/CFS must have other symptoms on top of feeling ‘extremely tired and generally unwell’ (there is no ‘may’ here). Again it would appear the NHS is buying into the Oxford case definition, created by academics interested in extending psychiatric hegemony over as many illnesses as possible, which (conveniently) reduces ME/CFS to a clinical entity encompassing otherwise healthy people with the symptom of chronic fatigue … and over-selecting people with psychological co-morbidities.
3) “other conditions with similar symptoms need to be ruled out first” [before a diagnosis of ME/CFS is made]
Unfortunately, rhetoric does not equal reality – at least, not for all patients. After 30 years of increasing neurological symptoms, some of which (diplopia, migraine, paraesthesia, ataxia, dysphagia etc) have clearly long since indicated a need for neurological investigation, and after 30 years of being refused neurological investigation, I have finally been granted an NHS referral for investigation to rule out (or diagnose) other conditions with similar symptoms. I am by no means alone in experiencing this kind of systematic clinical neglect. What is very concerning is that research suggests that minority groups may be more likely to be subjected to such neglect (dismissal, refusal to investigate) as well as systematic gaslighting (psychological abuse). I wonder how many ‘medically unexplained symptoms’ would actually become ‘medically explained’ if patients were taken seriously and investigated fully?
4) Finally, it has to be noted that the NHS is still recommending CBT and GET as “specialist treatments” for ME/CFS.
There are no ‘specialist’ treatments for ME/CFS. CBT may be helpful for some as an adjunctive therapy, notably for people with psychological co-morbidities - which may arise as a result of living with such a disabling and yet neglected illness. However, analyses and comparison of primary and secondary patient survey data (n=1428, n=16,665) have suggested that the majority of respondents experience no benefit from either CBT or GET, with GET associated with marked deterioration in approximately half of respondents.* Yet the NHS are still recommending that people with ME/CFS be subjected to these ‘treatments’. This is tantamount to recommending patient harm. It probably doesn’t help matters that some of the highly influential psychiatrists mentioned earlier are strong proponents of these ‘treatments’ and are (or have been) NHS and government advisors, and in some cases provide consultancy to health insurance giants whose agendas sit very comfortably with those of the government. Where are the interests of patients in all this?
* Geraghty, K., Hann, M., & Kurtev, S. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology, 24(10), 1318–1333.
The ‘next review due’ date on these NHS pages is (was) May 2020; it is understandable that CV19 has caused delays in this respect. However, it is not okay to leave misleading, inaccurate, stigmatising and otherwise harmful information about an already marginalised patient group online, especially under the NHS banner. These pages require taking down or at the very least having a large caveat attached to each page. This is something that I have outlined in my emails to the NHS, so far without response.
Addendum and caveat: I use the term ME/CFS in good knowledge of the debates around nomenclature and the suggestion from some people that ME is a separate entity to CFS (a suggestion that I largely support). However, I use the term ME/CFS in acknowledgement of the fact that a number of researchers have obfuscated the clinical and research picture to the point where it is impossible to know exactly what we are measuring and assessing (for example, one systematic review showed that over 20 case definitions for ME/CFS have been used in research). ME/CFS is far from ideal as a diagnostic label, but it is the term I will use in posts unless specifically trying to differentiate.