🌍 A manifesto for change: from strategy to inquiry

Parts of a blog by Valerie Eliot Smith
the entire blog can be found here

In a few months’ time, in August 2022, this blog will have been in existence for ten years. My research has been ongoing for far longer than that. The thesis of my work, as documented within this blog, is that, for a variety of reasons, the progress of change for the international ME community during the last fifty years has been painfully and unnecessarily slow.

The ME community urgently needs to adopt a more assertive, proactive and robust approach to its activism. A much more targeted media presence should be cultivated and a complete re-set of the toxic culture surrounding ME is urgently required. This approach should be mediated by obtaining independent, professional advice on strategic planning, media handling (digital + legacy) and political lobbying.

The current practices by many groups of picking off individual journalists who may appear to be sympathetic or sending out huge numbers of unpersonalised media releases is demonstrably unsuccessful. Equally, defensive responses to unhelpful and inaccurate articles, whether in writing, by interview or on social media, are clearly not cutting it, judging by the very mixed bag of media coverage over the last 40-50 years.

Whilst high-quality research at an appropriate scale is to be welcomed (such as the ongoing DecodeME study in the UK), state funding for research remains derisory and private funding is necessarily limited. Total funding in all countries falls far short of being commensurate with disease burden. This will not change at any speed or scale until the entire culture surrounding this illness is changed.

The ME community must take control of the narrative and keep it where it belongs – with patients.

Beyond the new NICE guideline

In recent years, the various ME charities and patient groups worldwide have increased their focus and resources on advocacy and media strategies. However, whilst these efforts are laudable, they are not at a scale which will achieve the requisite changes at the necessary pace.

There is also insufficient evidence of the deep level of understanding of strategic planning and expertise in media handling which is required to address the challenges and secure the change of narrative so urgently needed by the international patient community.

The degree of sophistication in approach varies between individual organisations and between countries but overall strategies are failing to protect and promote the interests of patients.

In July 2021, I wrote a post exploring where the ME community should be focusing its efforts after publication of the NICE guideline. Below is a substantially revised and updated version of that post.

A new robust strategy is required, aimed at addressing the reputational damage caused to members of the patient community, collectively and individually, by a psychiatric lobby group which frequently promotes its own interests above those of patients.

The determination of this powerful group to exert inappropriate influence over public policy was nowhere more evident than in its attempt in 2021 to interfere with the final publication of new NICE guideline.

This insidious attempt at subverting the process delayed the publication by nearly three months and succeeded in further diluting the original text. It wasted time and money, and caused enormous unjustifiable distress to an already traumatised patient community.

This lobby group has a number of ongoing objectives, including:

  • Promoting inappropriate, sometimes dangerous, psychological and behavioural treatments for the disease
  • Denying the overwhelming need for long overdue biomedical research
  • Continuing to cultivate and maintain an environment which is ultimately hostile to the ME patient community

Proposed MEComms

Following an earlier post which examined the rationale for a new communications strategy for the UK’s ME patient community, a number of issues arose from the feedback. These are the key points:

  1. MEComms: the proposed new coalition – “MEComms” – should be composed of representatives from a small number of established patient groups in order to share resources and for continuity. MEComms would then establish a media steering group (or committee) with an agreed mandate.
    (Note: this project will have a lower chance of success if it is initiated by a single existing group as it is unlikely to be able to achieve the necessary scale or level of community trust. Community divisions are always a challenge; as I said in my previous post, the aim should be for a unified, rather than a united, approach.)
  2. Professional expertise: MEComms must obtain expert, professional advice and support. The proposal is too complex and far-reaching to work on an amateur basis, however keen its participants. This is a patient community of severely restricted capability because of a) the excessively debilitating nature of the illness and b) a limited pool of external supporters who are willing and able to pitch in and assist.
  3. Scale: my proposal is on a much larger scale than anything that has been used previously. ME charities and groups do have media strategies in place but these are much smaller than what I am proposing and have insufficient impact to facilitate change at the required level.
  4. Implementation: a simplified pathway for implementing my proposal for this strategy is set out in my 2019 post “Changing the narrative #3” (scroll down to second half) There is some further detail in “Changing the narrative #4”.
  5. Funding: adequate funding is vital and must be addressed before anything concrete can begin. Again, see previous posts Changing the narrative #3 and #4 (above). This is not a project which can expect success on a pro bono basis or on a minimal budget.

Looking to the future, the initial priority would be to change the existing flawed narrative around ME and its patient community. This is the first stage in creating a positive and constructive environment with the longer term aim of securing a public inquiry.


A MANIFESTO FOR CHANGE: THE REMIT

From media strategy to public inquiry

MEComms’ remit should be to commence work on the following (with appropriate professional advice and assistance):

  1. Develop a new communications/public affairs strategy and media platform
  2. Provide accurate information and updates both outside and inside the ME community
  3. Construct a positive, accurate narrative, with a particular emphasis on proactive dissemination of information, and be ready to counter misinformation as necessary
  4. Address the reputational damage which the community has experienced by creating a counter-narrative to the previously pejorative stories peddled to, and by, the media
  5. Once 1-4 above start to take effect, commence a lobbying programme with a view to securing a full public inquiry

This will take time, effort and, controversially, a long overdue review and redistribution of resources.

Valerie Eliot Smith, March 16, 2022

Read the entire blog here

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