Back in December, I (again) emailed NHS Digital to ask them to remove inaccurate and potentially harmful information from their ME/CFS webpages. Essentially, I asked them to remove false statements such as 'most people get better' and (whilst awaiting final NICE guidelines) either remove or add a very large caveat to the suggestion that GET and CBT are 'specialist treatments'. My original letter (not my best work but the best I could manage at the time) is posted at the end of this blogpost.
I have now received a response from NHS Digital:
Our Subject Matter Experts from the NHS website Team have provided us with the following response to your enquiry.
Thank you for your contact regarding our information on CFS/ME. This topic is currently under review and we are awaiting the full guideline from NICE to be published so we are able to comprehensively update our information in line with their guidance. We are unfortunately unable to make these changes until the draft guidance is published as our current policy is not to use draft guidance to make clinical changes to our content. I apologise for the delay in making these updates, as the draft guidelines were pushed back to this 2021. Please be assured that we will be working closely with our clinical team as soon as possible to avoid any inaccurate information on our pages.
This sadly predictable response from NHS Digital misses the point regarding some of the inaccuracies and otherwise misleading information on these webpages. For example, statements about most people with ME/CFS getting better, or the inference that fatigue is the only necessary symptom, has nothing to do with the upcoming final NICE guidelines. Rather, it is empirically and clinically unsubstantiated and risks further stigmatising and minimising the lived experience of an already stigmatised patient group. Further, NICE's evidence review of non-pharmacological interventions (notably CBT and GET) demonstrates such poor quality evidence that, alongside clear evidence of harms from patient narrative, patient survey data and subsequent analyses, it is seriously disturbing that NHS Digital are not concerned enough to add a caveat at the very least. Even prior to the NICE review, there was a strong ethical argument to suggest that GET should be removed from NICE guidelines (and NHS webpages) pending a full review. The response of NHS Digital on this matter suggests to me a complete lack of interest in the well-being of people with ME/CFS.
I note that these NHS pages were last reviewed 29 January 2021. Apparently then, NHS Digital had time to make a review of these pitiful pages (subsequent to the NICE draft, subsequent to my letter and I am sure subsequent to other people's complaints), yet did not have time to add a caveat to them.
Edit: very oddly, although I went through these pages with a fine tooth comb after I received a response from NHS Digital, I do not remember seeing this little note which now appears on the landing page of the ME/CFS pages: "New guidelines on CFS/ME are currently being developed by NICE. Once the full guidelines are published we'll update this page to reflect any changes." Equally, NHS Digital did not point this out to me when they contacted me, which makes me wonder exactly when this appeared. Having navigated NHS policy and practice as a patient with medically unexplained symptoms for 30 years or more, and having worked in the NHS for a short while, I have been struck by an institutional level lack of transparency. Perhaps this is a further example of that lack of transparency, who knows. Anyhow, I don't class this little note as an acceptable caveat for what is, incontrovertibly, inaccurate information that is not dependent on the final NICE guidelines, along with information that is harmful to patients.
Like many people with this life-destroying illness, my health is so poor that I have 'pick my battles' for want of a better phrase. I have previously raised concerns about the misinformation on NHS Digital pages (on a different health topic) and it took almost a year and an escalation to the Department of Health and Social Care before it was finally conceded that the information was misleading, outdated and needed changing. We can only hope that the upcoming NICE guidelines on ME/CFS hold no unpleasant surprises and that this spurs NHS Digital into updating its public-facing information as quickly as possible. I hope to email NHS Digital again on publication of the NICE guidelines to give them a prod.
My letter to NHS Digital, December 2020:
Concerns about information on NHS Digital pages for ME/CFS
To whom it may concern,
I would like to raise a number of concerns over misleading, inaccurate and potentially harmful statements on NHS webpages pertaining to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), available at https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/. If you are not the appropriate point of contact on this matter, please let me know so that I can address my concerns accordingly.
My principle concerns relate to the following statements:
1) “Most people with CFS get better over time” (‘Overview’ page)
This is not true. Prognosis in ME/CFS is difficult to determine owing to factors such as a highly heterogeneous patient population, differing case definitions in research, bias in studies and the fact that the most severely affected people with ME/CFS are not infrequently excluded from (notably psychosocial) research. However, one systematic review examining 14 studies (1) found that median full recovery rate during follow-up was 5%, whilst the median proportion of patients who improved during follow-up was 39.5%. Why the NHS fails to draw on such research, I’m not clear, but what is clear is that there is no basis to suggest that ‘most people get better’. Therefore, this statement needs to be removed from the NHS webpages and updated accordingly.
2) “The main symptom of CFS/ME is feeling extremely tired and generally unwell. In addition, people with CFS/ME may have other symptoms …” (‘Overview’ page)
Not everybody with ME/CFS considers extreme tiredness to be their primary symptom. Indeed, ‘tiredness’ does not even begin to convey the lived experience of patients or potential underlying pathophysiology. Many experts agree that the hallmark symptom of ME/CFS is post-exertional malaise or post-exertional neuroimmune exhaustion, whilst the recent NICE draft on the diagnosis and management of ME/CFS (2) uses the term post-exertional symptom exacerbation. None of these terms are synonymous with fatigue or ‘feeling extremely tired’. Some people with ME/CFS state that they do not have what they consider to be ‘tiredness’ or ‘fatigue’, suggesting that medical discourse around ME/CFS, and the term CFS, does not respect patient narrative. ‘Generally unwell’ represents a huge downplaying of the lived experience of ME/CFS, in particular at the severe end of the spectrum where people are frequently bedbound with a multitude of disabling symptoms and require support for all tasks of daily living.
Furthermore, people with ME/CFS must have other symptoms on top of feeling ‘extremely tired and generally unwell’ (there is no ‘may’ here). It would seem on this point that the NHS is drawing upon Oxford Criteria on CFS (3), a very broad set of criteria which risk selecting otherwise healthy people with the symptom of chronic fatigue and which have been widely criticised by much of the scientific community as being unfit for purpose. The NHS webpages require updating to reflect patient and clinical experience, perhaps drawing upon more comprehensive case definitions or clinical criteria (4).
3) “other conditions with similar symptoms need to be ruled out first” [before a diagnosis of ME/CFS is made] (‘Diagnosis’ page)
Unfortunately, best practice does not always equal reality – at least, not for all patients. Having lived with the symptoms of ME/CFS for over 30 years, and having worked clinically with people with ME/CFS, I can attest to the fact that some people with ME/CFS do not get any biomedical investigations past routine bloodwork, even where their symptoms and clinical history indicate further investigation. Research has also shown concerning misdiagnosis rates in samples of people with ME/CFS referred to ‘specialist clinics’ (5, 6). Although the above statement regarding differential diagnosis is a fair reflection of what should be happening in clinical practice, it is far from being standard practice and for this reason it warrants being flagged up.
Finally, and perhaps most conspicuously:
4) The NHS is still listing CBT and GET as ‘specialist treatments’ for ME/CFS (‘Treatment’ page)
Patient have been telling us for many years (prior to the recent NICE draft on the diagnosis and management of ME/CFS) that CBT and GET can be harmful. 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 over half of respondents (7). The recent NICE evidence review supports this, with NICE rating the evidence for such ‘treatments’ as low or very low (8). The NICE draft has recommended the proscription of GET, with CBT to be offered as a supportive therapy (not a treatment) for people with ME/CFS who choose it. On these grounds, it is inaccurate to refer to either GET or CBT as either ‘specialist’ or ‘treatments’. Therefore, I would ask you to remove this information from NHS webpages (and other NHS literature) as soon as possible.
In raising these concerns, I have not addressed the issue of nomenclature: ME/CFS is an umbrella term which causes many problems in research and clinical practice, whilst CFS is considered misleading and inaccurate by many patients and patient organisations. Though debates around terminology are beyond the scope of this email, ME/CFS is the term suggested by the NICE draft guidelines. Unless this changes in the final guidelines, I hope that the NHS webpages (and broader NHS literature) will adopt this term, as opposed to CFS/ME or simply CFS.
To conclude, people with ME/CFS not infrequently report that significant others, journalists and even healthcare professionals make minimising and inaccurate statements about their illness (such as ‘most people get better’ or ‘ the main symptom is tiredness’). I highly suspect that some of this comes from well-meaning people turning to what they reasonably assume is a reliable source of information (NHS webpages). As such, and particularly in view of the NICE draft guidelines, the (mis)information on NHS webpages pertaining to ME/CFS needs to be addressed as a matter of urgency. If the NHS is waiting for the final version of NICE guidelines to be published before making certain changes, then I would ask that a very large caveat is placed over all of the NHS webpages that contain misleading and inaccurate statements. It should also be considered that the current misinformation on NHS webpages is not only harmful to people with ME/CFS. Given that a sub-set of people with Long Covid will likely be diagnosed with ME/CFS, there is clear risk of harm to both patient groups, alongside risk of further stigmatising people with ME/CFS (through misinformation downplaying their illness) and fostering inter-group divisions.
I would appreciate your earliest response on this matter.
References
(1) Cairns, R., & Hotopf, M. (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational Medicine (Oxford, England), 55(1), 20–31.
(2) National Institute for Health and Care Excellence (NICE; 2020). Guideline: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: Diagnosis and management. Draft for consultation. https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline
(3) Sharpe, M. C., Archard, L. C., Banatvala, J. E., Borysiewicz, L. K., Clare, A. W., David, A., Edwards, R. H., Hawton, K. E., Lambert, H. P., Lane, R. J., & et. al. (1991). A report - chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine, 84(2), 118–121.
(4) Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C. P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., … Stevens, S. (2011). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270(4), 327–338.
(5) Newton, J. L., Mabillard, H., Scott, A., Hoad, A., & Spickett, G. (2010). The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. The Journal of the Royal College of Physicians of Edinburgh, 40(4), 304–307.
(6) Devasahayam, A., Lawn, T., Murphy, M., & White, P. D. (2012). Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey. JRSM Short Reports, 3(1), 4.