As there wasn't time to potentially organise something through S4ME, I sent an email to the specified address providing feedback on the draft media guideline. To ensure AfME had sight of the feedback on this
thread I also tried in my own words to incorporate points with which I agreed. It was a bit of a rush on my part, I'm afraid, so it might have been more thorough and better phrased in places.
--------------------
Please find below feedback for the media guideline consultation.
Overview:
These media guidelines may be better served as a Forward ME initiative, in order to open up resources and image bank options, as well as potential contacts for comment and advice on articles. An improved format may be a fact sheet supported by references that a journalist could harvest information from wholesale, with supplementary dos and don'ts, as this may be quicker to use and lead to more informed article content.
Why theses guidelines are necessary:
1. '
There has been a huge stigma attached to ME, with people claiming the condition is not real or even that it is a psychological condition'
This reads as if it is considered worse to be thought to have a 'psychological condition' than one that is 'not real'. Arguments based on ME/CFS not being a psychological condition are often mischaracterised and may alienate readers if repeated in the media. Suggest instead to focus on stigma and prejudice.
2. The term 'enforced exercise' isn't accurate. Suggest instead to briefly explain in plain language that graded exercise therapy was previously recommended, but leads to deterioration in many according to patient surveys, that evidence for all outcomes in trials of exercise therapy was found by NICE to be of poor or very poor quality, and GET is therefore explicitly no longer recommended for PwME. Preferable to describe GET and other poorly evidenced interventions as 'ineffective and potentially harmful' rather than 'misleading and damaging'.
Use of Language:
Do:
3. 'Refer to myalgic encephalomyelitis':
The term, 'myalgic encephalomyelitis' indicates pathology that is not established. Although there are also a number of issues with the term 'chronic fatigue syndrome', for inclusivity for those diagnosed with 'CFS' and in the absence of a term that accurately describes the disease process, suggest recommending use of ME/CFS, which is in keeping with 2021 NICE guideline.
4. '
Explain the wide variety of symptoms':
This could be misleading for the reader if specific information on symptoms is not provided. ME/CFS is a well-defined medical syndrome with the hallmark feature, post-exertional malaise. Suggest to recommend focusing on core symptom criteria of the 2021 NICE guideline (with emphasis on PEM), and for journalists to refer to some of the additional NICE listed symptoms described as also experienced in other illnesses, if there is room in a piece.
5. '
Do consult as widely as possible with people with ME':
Not all articles will require wide consultation and quality of consultation where relevant will be of greater consequence than consulting widely. This document may be better served by being a Forward ME initiative rather than solely an Action for ME one. All Forward ME organisations with relevant capacity may then potentially be listed as resources for advice, comment, and further information. This may also serve to open up the image bank options.
6. '
ME is not the same as long covid and the two terms should not be confused with one another':
It is generally accepted that a range of infections including common viral illnesses may trigger ME/CFS, the most recent of which being Covid-19. It is incorrect to state that ME/CFS is not the same as Long Covid given a substantial percentage of people with ongoing symptoms 6 months post Covid-19 infection are being found to meet diagnostic criteria for ME/CFS. Whilst the term 'Long Covid' is applied to a variety of post covid sequelae, the extent of overlap with ME/CFS should be explained.
7. '
Be careful about referring to recovery from M.E., e.g., referencing that the person "had M.E." without providing the full context of the condition. While some people do recover from M.E., many more do not and many relapse repeatedly.':
Recovery rates appear to be higher in the first two years of illness, but dropping off after that time. In light of the fact that recovery is often attributed to the therapy, supplement or otherwise most recently used to attempt to treat ME/CFS, suggest recommending journalists avoid inclusion of anecdote that attributes recovery to a particular treatment or alternative therapy, as there is no evidence for this.
Don't:
8. '
Don't refer to fatigue or chronic fatigue.':
This needs clarifying as it is appropriate to refer to fatigue as part of the symptomatology of ME/CFS (e.g., as part of core NICE criteria for suspicion and diagnosis, with fatigablility). But 'chronic fatigue' should not be used instead of the term, 'ME/CFS', and it's not appropriate to focus on fatigue or chronic fatigue to the exclusion of other ME/CFS symptoms, notably the hallmark feature post-exertional malaise.
The document recommends not referring to 'fatigue' but then refers to 'persistent fatigue' in the About ME section, so it is not currently internally consistent.
9. '
Don't just refer to tiredness as a symptom of ME':
The word 'just' in this sentence implies it is appropriate to refer to tiredness provided other symptoms are also referred to. It would be better simply to say, 'don't use the words "tired" or "tiredness" when describing symptoms of ME/CFS.'
The NHS website is problematic in this regard, as it describes the most common symptom as 'extreme tiredness'. Journalists should be made aware that many service websites, including the main NHS ME/CFS website, have either not yet updated their materials to be guideline compliant, or have updated but are nonetheless not compliant with the 2021 NICE guideline, so for the foreseeable this is something to watch for when using uncurated resources, even if produced by an official source..
10. '
Don't use the term "high-achievers" for those experiencing ME but able to function more normally':
The specific case described doesn't appear to be a common problem. It may be more relevant to recommend not suggesting that personality traits (or behaviours, thinking patterns, mental illness) are generally relevant to developing or not recovering from ME/CFS. Also applies to point 5 of 10 things to remember.
About myalgic encephalomyelitis
11. The prevalence estimate would appear to be at the higher end; a range encompassing more conservative statistics may be appropriate.
12. ME is categorised by the World Health Organisation as neurological, but it's not correct to say it is a neurological condition. It is also not clear what the basis for stating the neurological and immune systems are most commonly affected is. It would be best to stick to factual statements that are supported by evidence. Suggest: 'ME is a well-defined medical condition with the hallmark clinical feature, post-exertional malaise..'
Some advocates prefer the term 'disease' to 'condition' when referring to ME/CFS, the latter being a much broader term that may be considered trivialising. As specific symptoms and what is often significant reduction in function are both present in ME/CFS, although the disease process (or processes) is not yet known, use of 'disease' rather than 'condition' would seem reasonable.
13. '
25% of people with M.E. are severely affected, house or bedbound and unable to care for themselves':
Needs rephrasing as reads that most severe 25% are unable to care for themselves, whereas the amount of support and care required by house and bedbound varies substantially. Also applies to point 4 of 10 key things to remember.
14. '
ME doesn't discriminate and can impact anyone. Yet at present there is no definitive diagnostic test, no universally effective treatment and no known cure':
Meaning of 'can impact anyone' is unclear, suggest 'can affect anyone', instead. Stating there is no definitive diagnostic test suggests there are useful diagnostic tests available. This is not accurate, so should read 'there is currently no diagnostic test'. Could refer to diagnostic criteria and ruling out other medical conditions that may be responsible for symptoms to clarify how diagnosis is usually made.
'
No universally effective treatment' makes it sound as if there are effective treatments for some, but there is no satisfactory evidence for this. It also aligns unhelpfully with the narrative put forward by some that a personalised approach to rehabilitation can be effective. Again, there's no evidence for this.
About Action for ME
15. It may be better not to refer to Action for ME's history here and simply state 'AfME works to improve...'. I suspect other UK ME/CFS charities do provide support for PwME of all ages, although AfME presumably has dedicated expertise and provision for children due to the merger with AYME. If so, this could perhaps be made a touch clearer.
10 Things to remember when communicating about ME:
16. Point 3: Suggest not insisting that even mildest cases have at least 50 per cent reduction in usual capacity in this context, as people with ME/CFS may be high functioning but still experience PEM and other symptoms and are at risk of deterioration to a more severe level. If this is repeated in the media, it may lead to family members of PwME and others to doubt diagnosis.
17. Point 5: Once again, preferable not to raise arguments re ME/CFS not being a psychological condition. Point 5 does not appear to be a common case. It is more common for personality traits, behaviours, mental illness etc to be portrayed as predisposing, precipitating or perpetuating factors, so may be better to address this instead.
Additional
18. Suggest inclusion of a short list of further resources. If a Forward ME project this might include the short guide to the NICE guideline produced by the ME Association.
Thank you for producing this media guideline, requesting feedback to improve it, and AfME's ongoing work for people with ME/CFS.
---------------------------------
