FOLLOW-UP to previous post on responses to the draft NICE guideline for “ME/CFS” + the need for a communications strategy rethink

This post follows up on some of the feedback from my previous post on possible community responses to the draft NICE guideline for “ME/CFS”. A number of points have been raised directly and on social media. It’s easier to address them here rather than trying to pick them off individually. 

NICE GUIDELINE RESPONSES

Re-cap

In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the existing guideline on myalgic encephalomyelitis (ME), originally published in 2007. Within the UK, Scotland and Northern Ireland have their own equivalent processes and legal systems. This post relates to the situation in England and Wales.

The draft consultation documents were published on 10 November 2020, followed by a six-week consultation period concluding on 22 December 2020. The final publication date has been delayed several times but is now expected on 18 August 2021.

[NOTE: “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” (NICE’s terminology) is the subject of numerous different names and a confusing variety of case definitions. For the purposes of this blog, it is ME, the complex, multi-systemic neuroimmune disease with which I have lived since 1981.]

The function of judicial review as a response to the final publication of the new NICE guidance

Judicial review is only concerned with the lawfulness of a public body’s (ie. NICE’s) decision-making process. It is not about whether or not the judge agrees with the substance of the decision. This extract from the judiciary.uk website explains more:

…[J]udicial reviews are a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached.

It is not really concerned with the conclusions of that process and whether those were ‘right’, as long as the right procedures have been followed. The court will not substitute what it thinks is the ‘correct’ decision.

This may mean that the public body will be able to make the same decision again, so long as it does so in a lawful way.

This means that the High Court will not be re-examining the evidence relating to ME as a health condition. The judge will simply be considering the process of how the decision was made. It is not a reconsideration of the merits of the scientific basis for the decision. That is a matter for the guideline committee appointed for that purpose by NICE and the court would not interfere with the substantive findings on the evidence by that committee. 

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THE COMMUNICATIONS STRATEGY RATIONALE

This topic is directly relevant to the NICE process. Popular culture still reflects a negative perception of the ME community, long Covid notwithstanding. A simple glance at the very mixed media coverage on the topic – and the comments arising from it – confirms this beyond doubt.

Decision makers at all levels are influenced by media reports and lobbying strategies, as part of either a conscious and/or a sub-conscious process. Despite some recent progress, the ME patient community is still not a player at the right level to be able to achieve significant change.

Dealing with misinformation

The “psychiatric lobby”, (to which I referred in my earlier post) is still intent on protecting its position as the controlling player in the ME narrative. Members of this group continue to promote their collective, misguided belief in the benefits of psychological and behavioural therapies as suitable treatments, thereby indirectly obstructing urgently-needed biomedical research.

One question which is often raised by the ME community is how to counter the misinformation propagated by this extremely powerful lobby. In response to one such recent inquiry, I made these points (paraphrased):

• Our focus should not be on countering misinformation. We know from previous experience that it’s not very effective. Our long-term aim should be to develop a strategic plan which incorporates a broad media platform. This is so that the patient community can set its own media agenda and create its own narrative. Simply trying to counter misinformation off the back foot doesn’t work and looks weak and defensive.
• There is only a limited amount that individuals and small groups can do in isolation. If different groups are trying to counter the psychiatric lobby’s narrative separately and tell the patient story inconsistently then again, we just appear disunited and powerless. The building of a patient-oriented media agenda must come from a broad coalition of groups appointed specifically for that purpose, however difficult that may be to coordinate and manage.

Yet another example of carefully-placed misinformation appeared again recently in the BMJ Opinion section. Snappily entitled “Many patients with ‘long’ covid are experiencing extreme fatigue, a situation that has re-polarised approaches to treatment and rehabilitation”, it again repeated the depiction of the ME patient community as a crowd of dangerous, deluded agitants. The article attracted some excellent responses – but they are just that – responses and therefore defensive rather than proactive.

The ME patient community urgently requires a proper communications strategy and media development plan. This should be the brief for a media steering group, as I have already described in an earlier post from 2019 (second half). The aims of such a group should include:

• Taking control of and resetting the media narrative in an appropriate context which is a) accurate and b) sympathetic to patients
• Addressing once and for all the unresolved legacy and reputational damage caused by the portrayal of sections of the ME patient community as dangerous activists
• Providing reliable, up-to-date practical and scientific information about the disease
• Being ready to produce instant, agile and coordinated responses in order to rebut partisan stories masquerading as responsible journalism
• Obtaining professional assistance for devising an effective lobbying strategy

Good communication needs to be internal as well as external

A strong communications strategy is required to keep members of the ME community informed about ongoing actions, initiatives and planning. At the moment, the community consists of a multitude of disparate groups working in different ways, often duplicating each other’s work and resulting in an inconsistent approach to community concerns.

Whilst there will always be significant disagreements and debate between and within patient groups, a more unified (as opposed to united) range of voices would enhance the credibility of the community. 

As well as an external media platform, an internal communications network would improve the morale of the ME patient community in the UK. The two platforms should be properly joined up, internally and externally, to create a more constructive environment in which to campaign, advocate and support the wider community, and better inform its participants and its wider audiences. 

Many patient groups and charities do already make considerable efforts to keep everyone informed about what they are doing but it’s hard to keep track of all the different channels of communication. A few groups still remain quite closed so it’s difficult to know what may be taking place within their confines. 

Funding 

Funding is always a challenge but it is not insurmountable and I have previously set out a basic pathway in my post Changing the narrative #3. We know that the international ME community is quite capable of raising substantial funds if the cause is properly promoted and has sufficient credibility from within the community and from external donors. Crowdfunding campaigns by David Tuller and Keith Geraghty have proved this in recent years so the claim that we cannot raise funding is no longer justified. 

Some members of the ME community are concerned that this initiative would be wasting precious resources on “just a bit of PR”. Whilst what I am proposing would include input from a professional communications advisor, the proposal involves a much more wide-ranging and detailed strategy than has been tried previously by individual groups. 

If not now, when?

ME has been around as documented illness for nearly a hundred years. The international patient community is still struggling to secure proper recognition and treatment. This suggests that, despite enormous efforts, we haven’t yet got the message right. A radical overhaul of our priorities and strategy is long overdue.

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CHANGING THE NARRATIVE 

This is a summary of the series I wrote in 2019. The full list can be found here.

Changing the narrative #1 Introduction and setting out the rationale for the series

Changing the narrative #2 Examination of the unresolved legacy of the negative portrayal of the ME community

Changing the narrative #3 Proposes ways to address the general challenges faced by the community and reputational damage problem in particular. Includes a simplifed pathway for the process (including funding)

Changing the narrative #4 Follows up on some of the issues raised by the series

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