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United Kingdom 2022: Action for ME (AfME) Consultation on media guidelines

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Aug 18, 2022.

  1. Andy

    Andy Committee Member

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    Post copied and some subsequent posts moved from
    United Kingdom: Action for ME (AfME) news


    Consultation on Media Guidelines for M.E.

    "This consultation seeks feedback on suggested media advice for journalists reporting on M.E. and developing a helpful handbook of best practices for distribution to media outlets.

    The purpose of this consultation is to gather opinions from important stakeholders to ensure that all perspectives of the community are captured.

    Currently, the Action ME - Media Guidelines.pdf comprise of 10 easy points to keep in mind whilst writing about M.E.

    For example, "tired" is often used in the media, which can undermine the seriousness of the condition and upset those living with M.E., many of whom are unable to care for themselves in the most extreme circumstances.

    The consultation is currently accessible to all interested parties and will continue until Monday 12th of September 2022, the document will be officially released with all public responses considered."

    https://www.actionforme.org.uk/news/consultation-on-media-guidelines-for-m.e/
     
    Last edited by a moderator: Aug 20, 2022
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  2. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Would it be worth setting up a thread on this with a view to S4ME submitting a response, if enough people have the capacity? (I’m not able to help much at the moment and appreciate many others nay be in the same position, but I will try to send some feedback and I would try contribute if there was a thread.)
     
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  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    hardly surprising seeing the main NHS website says in the first few lines
    "The most common symptom is extreme tiredness.".
     
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  4. Hutan

    Hutan Moderator Staff Member

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    This is the guideline content:


    I did not expect to disagree with so much in this draft.
    For a start, this:
    That's misrepresentation. I think this media guidelines initiative should be a Forward ME project.
     
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  5. chrisb

    chrisb Senior Member (Voting Rights)

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    Remind me again. How did endorsing the PACE trial improve the lives of people with ME. If I am not mistaken that took place within the last 35 years. There are dangers in juxtapositions which cause people to remember things you would rather they forgot.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    Some comments from me:

    Condition versus disease
    AfME sometimes uses 'condition' e.g. 'with people claiming the condition is not real'. I find the term condition is rather ambiguous, very minimising and quite 'othering', especially when used in 'their condition'. IOM managed to call it a disease, and why not?
    Disease: a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury.
    Function is substantially affected and there are specific symptoms - so, a disease. I actually think that this is something that could be mentioned in advice to media.

    Myalgic Encephalomyelitis, M.E.
    I understand there are regional preferences, but I'm strongly in favour of ME/CFS. It avoids claiming biological pathology that might not be true, it acknowledges that many people have been diagnosed with CFS. ME is, I think, a problematic abbreviation, all too easily parodied as being appropriate in an illness that is really just hypochondria, caused by being overly preoccupied with oneself.

    Do: Consult as widely as possible with people with M.E. when writing your article
    Do: Ask Action for M.E. for advice if you are unsure what language/tone/ imagery is appropriate to use

    Not every article requires wide consultation, and suggesting that it is necessary might well put some journalists off. The key is getting hold of people who understand the issues. That's part of why I think this initiative should come from Forward ME; if the key charities are listed as able to provide advice and comment, there's a better chance that the article will include good information.

    Don't: Refer to “fatigue” or “chronic fatigue” which can be a symptom of many different conditions
    So much of the wording slightly misses the mark and ends up adding to the confusion. This is one of them. It's ok to refer to fatigue as a symptom. I think they were trying to say, 'Don't refer to the illness as "fatigue" or "chronic fatigue". Chronic fatigue is symptom of many conditions.'

    Don't: Just refer to “tired” as a symptom of M.E.
    I'm not sure what the 'just' is doing there. So is it ok to refer to "tired", or even "being tired", as a symptom of M.E. if you also mention other symptoms? Perhaps it should be
    'don't use the word "tired" when describing ME/CFS. "Tiredness" suggests sleepiness and the potential to fix it with a good sleep. Better words are "debilitating fatigue" or "profound exhaustion".
    The wide variety of symptoms is mentioned already.

    Use the term “high-achievers” for those experiencing M.E. but able to function more ‘normally’
    I don't think this is a common problem; it's probably not worth saying.

    I've run out of energy, so will just add a few more:

    M.E. doesn’t discriminate and can impact anyone. Yet at present there is no definitive diagnostic test, no universally effective treatment and no known cure.
    'Doesn't discriminate' is oddly anthropomorphising. 'Can impact anyone'? What does that mean? Just say 'ME/CFS can affect anyone.' A definitive diagnostic test - never mind the 'definitive'. There is no diagnostic test. 'No universally effective treatment' - that makes it sound as if there is no one treatment that fixes everyone, but leaves open the possibility that there are treatments. It smacks of pandering to the rehabilitationists who think what they do makes a difference. I think this is a good test of where AfME actually is - are they fence-sitting so as to not upset the people who think that gently applied goal setting and exercise and CBT are useful treatments? The statement should be 'There is no diagnostic test, no effective treatment and no cure'.


    M.E. is not the same as Long Covid and the two terms should not be confused with one another
    This just adds to the confusion - I find it really concerning that AfME thinks this is good information to be giving to the media. I think it should be explained that ME/CFS seems to be triggered by a range of infections such as glandular fever, Q-fever and most recently by Covid-19. Long Covid includes a variety of consequences of Covid-19 infections, but a substantial percentage of people with persisting symptoms 6 months after a Covid-19 infectious are being found to meet ME/CFS diagnostic criteria.

    Be careful about referring to recovery from M.E. e.g. referencing that 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
    I think a key thing to inform journalists of is that the majority of people who have had ME/CFS for 6 months will go on to recover, but recovery rates are low once the illness has persisted for 2 years. Natural recovery is often attributed to whatever treatment the person was trying at the time.

    Over the past 35 years, Action for M.E. has worked to improve the lives of people with M.E., taking action to reduce the isolation experienced by many and working to create change.
    AfME has a problematic past. For sure, they have been doing much better, but whitewashing the past is going to draw criticism and cynicism. There's no need to refer to AfME's history here. Just say 'AfME works to improve...'

    It's quite puzzling how AfME did such a poor job of this. I don't know why AfME doesn't workshop initiatives like this. Why not create a thread in the forum to gather ideas? Why not put out a call on social media for comments before drafting something?
     
    Last edited: Aug 23, 2022
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  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Agree. Was quite shocked to see this. Oversimplisitc, and wrong. If you've developed ME/CFS after SARS-Cov-2 then by definition you have long covid, so for these patients there's only one illness (and it has two names).
     
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  8. CRG

    CRG Senior Member (Voting Rights)

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    Probably not a popular opinion but I think the current doc is pretty good in terms of what is - which is a first text intro for journos who are not going to invest more than 120 seconds on a précis. Clearly this isn't for health journos working up a long article about ME/CFS but then they wouldn't need such a basic source anyway. I don't know how AfME are currently using this - it doesn't seem available as a download on their site and their contact set up is geared to phone contact so I guess they are sending the .pdf out in response to inquiries and appending to their own media releases - the latter being its most relevant use.

    When preparing this kind of doc you have to recognise how brutal most journalists are with info, they are trained to cut out what for them and their purpose on the day is waffle, it doesn't matter what is important to you - what matters is what is important to them. As a source the best you can do is guide the story in the most favourable direction as you see it, but don't expect any kindness to how you see the world.

    Any comms officer worth their salt will push their org ahead of others so what is being written has to be expected to put AfME in the best possible light which means a favourable history, claiming longevity and success etc, why would anyone do otherwise ? It would be a policy decision as to whether to move from ME to ME/CFS following the NICE change - as a branding issue it's difficult because AfME is a nice rounded reference - no fussy 'CFS' in there. AfME's candy stripes are also a bit iffy - I doubt they'd want to lose them but personally I'd cut back on the pastels in the .pdf Other than that I'd stick with the format but give it to some friendly (and if possible some less friendly) journos to rip apart before going further.
     
  9. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    I put this on Twitter after reading your post:
     
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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    @Hutan on comments about recovery from ME do you mean the majority of people who recover from ME do so within 2 years
    Rather than the majority of people who have ME for 6months recover within 2 years?

    recovery best information is 5% according to ME Assn purple book.
     
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  11. Hutan

    Hutan Moderator Staff Member

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    The reason anyone would do otherwise is that skeletons in the closet can come out to bite you if the door is opened. AfME mentioning 35 years of working for people with ME/CFS tends to invite comment about its involvement in the PACE trial and some of its past documents and associations that were ambivalent at best. Thirty five years of operation isn't a particularly long length of time, so there isn't much gained by mentioning it. A smart comms officer would let sleeping dogs lie, and just refer to the good work the organisation is doing now.

    I meant that the majority of people with symptoms meeting ME/CFS criteria at 6 months will recover. I think there is evidence to support that idea from prospective ME/CFS and Long Covid studies. I think it's an important point to get across, as otherwise people will tend to think that whatever treatment they were trying at the time was the reason why they recovered.
     
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  12. Hutan

    Hutan Moderator Staff Member

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    Journalist Primer: How to Report on ME/CFS (from MEAction)
    It's interesting to compare this guideline for journalists from the US MEAction. I don't agree with everything in it, but it is much better about Long Covid. It is also generous in directing journalists to a range of ME/CFS charities and isn't an advertisement for MEAction masquerading as a guideline.
     
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  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Apologies, only able to skim, but in case it's helpful I'm aware of at least three somewhat related forum threads, even if more aimed at advocacy work in general:

    Non-evidenced & other potentially unhelpful arguments regarding biomedical and psychological ME research (members only)

    Useful arguments regarding the evidence provided by psychological and biomedical ME research? (public thread)

    A potential S4ME project: What are the basic science facts that ME advocates need to know and understand? (public thread)

    At least they invite all stakeholders for consultation. So hopefully they will listen.

    12th of September 2022 seems a bit of short notice though for people like us...
     
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  14. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Thanks, Hutan. I will go through it again carefully but I think you've covered most if not all of the points I was going to make.

    I don't know if it's better for each of us to submit feedback individually or whether it would be more effective to have a submission with multiple signatories, or something from S4ME as a group.
     
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  15. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    If I were a journalist I would prefer to have a fact sheet with references and under each point something like a 'beware' section about popular but misleading language, images and claims.

    We are now in the comfortable situation that we can refer to an official source in the UK, i.e. NICE, for much of the most relevant information, so I think that should be used.

    So perhaps the most important purpose of media guidelines should be to direct people to NICE and not to the NHS website (as long as the latter isn't corrected).

    Haven't read that yet but agree that "directing journalists to a range of ME/CFS charities" is better, and why not also mention that there's a patient-led online forum where science and the ME/CFS community meet?

    Edited for clarity.
     
    Last edited: Aug 22, 2022
  16. Hutan

    Hutan Moderator Staff Member

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    :thumbup:
     
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  17. CRG

    CRG Senior Member (Voting Rights)

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    There's an ambiguity in what AfME is asking for - it's not clear whether they mean their "handbook of best practices" will replace or, will be used alongside the existing guideline. Anyone making a response might want to address that along with the question of how the "handbook" can be best used - I'm doubtful that a post out to media outlets will be effective - in most cases it will be filed straight to "trash" or otherwise to some management folder dense with similar material that everyone is supposed to read and no one ever does.
     
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  18. NelliePledge

    NelliePledge Moderator Staff Member

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    They can send it to journalists who contact them. They can send it retrospectively to journalists who don’t contact them especially if the resulting article is deficient
     
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  19. CRG

    CRG Senior Member (Voting Rights)

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    Yes I assume that is how they use the current 'guidance' - additionally I'd make it available online as a media contact page.
     
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I think that, as things are at present, it is important to let journalists and anyone else know that the NHS England site does not accurately reflect the new NICE guidelines.
    the NHS Scotland site is much better.
    https://www.nhsinform.scot/illnesse...omyelitis-me-and-chronic-fatigue-syndrome-cfs
    (although I think it would be better to see links to other ME charities in addition to AfME ).

    Maybe twitterers (or is that tweeters?) could point out the discrepancy.
     
    Last edited: Aug 23, 2022
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