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A short post on long Covid media exposure

February 19, 2021

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times”  ~  Valerie Eliot Smith 2019

Yesterday (18 February 2021) in the UK, there was a media blitz on the experiences of those suffering with the highly distressing symptoms of long Covid. This included children, healthcare workers and teachers, with contributions from various experts on the condition.

I watched, listened and read. The stories were tragic and heartbreaking. Those living with long Covid are not receiving proper acknowledgment or treatment. Those who believe they contracted the condition via their workplaces (healthcare and education) are already seeking financial compensation for their extensive losses.

Most people who live with the disease myalgic encephalomyelitis/ME (as I have since 1981) are likely to have been absorbing these accounts with mixed feelings. The stories were horrific and the lack of proper medical recognition and care were deeply troubling. But these stories are almost identical to those with which people with ME have been living for many decades. And yet – ME patients are rarely heard or seen.

[Note: ME is sometimes referred to – confusingly – as “chronic fatigue syndrome” or “ME/CFS”]

So how did the long Covid stories get told?

This is no accident. Members of the long Covid community have organised themselves and are managing a well-orchestrated media campaign. This requires motivation, funding and appropriate advice on media handling. The results are highly visible – although, of course, whether or not this campaign achieves its objectives (whatever they are) remains to be seen.

Long Covid is a painfully current topic which is dominating the news in most countries. This gives it an enormous advantage over the ME patient community which has been in existence as a documented group for nearly a hundred years. This means that its novelty and currency as a news issue is almost non-existent, unlike long Covid.

What about ME patients?

Efforts to tailgate on long Covid issues are misguided. Over the years, the ME community has become a marginalised player on the international stage. Compared with visibility of the long Covid community, ME patients are a mere background blip.

Most patients with long Covid will go on to recover, although it may be a long, hard road. Only a few will ultimately be diagnosed correctly with ME. Conflating the two conditions may be detrimental to both patient cohorts. However, appropriate early management of the conditions may involve similar strategies.

Why the difference between the two groups?

This state of affairs is a direct result of decades of reputational damage inflicted on the ME patient community by so-called international ME and/or CFS “experts” (including, historically, Dr Anthony Fauci, Director of the NIAID in the US). Those “experts” retain great power and influence worldwide. Their reputations could suffer if ME patients were able to change the narrative and highlight their real status as a neglected and stigmatised group which has so far been denied respect, recognition and long-overdue “moonshot” style support.

The status quo is completely asymmetric; the balance of power remains hopelessly skewed in favour of the “experts” who retain power and against the interests of the international ME patient community.

About myalgic encephalomyelitis/ME

Many people who live with ME first become ill following an infection, similar to some living with long Covid. Although the initial infection may appear to have receded, patients do not then recover from the often devastating symptoms which persist, and may be lifelong. The range of symptoms is wide and the disease can be fatal. Prevalence estimates vary; the UK rate is generally put at around 250,000 patients, about twice as many as those with multiple sclerosis/MS.

The recovery rate from ME is estimated to be around 5%. As a result, the ME patient community is very familiar with the long-lasting effects of an initial infection which healthcare professionals frequently do not understand and often do not take seriously.

Can the ME community change the way it is viewed? 

Yes. I have advocated over and over again on this blog and elsewhere for a properly planned and executed media strategy. This is the only way to change a deeply entrenched cultural perception of the ME patient community as a nuisance group, undeserving of meaningful research and real treatment options. It is a huge challenge and one which is simply not being addressed. The small amount of media coverage which is achieved by various charities and individual patients is a drop in the ocean of what is actually needed.

However hard it is to see the extensive coverage of issues relating to long Covid and the shoddy treatment which many patients are receiving, the real frustration for me comes from knowing that, unlike the long Covid community, the ME community is failing to use even the most obvious routes to changing its own situation.

In 2019, I wrote a series of posts addressing the media challenges faced by the ME community. A specific pathway was laid out in the third part of that series (second half).

***************************

Five years ago, in February 2015, I wrote this:

Whatever happens next is certainly too late for the millions of patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes. And what assurance is there that anything concrete will happen during the next thirty years? Another generation of us – including me – will have died before then. That sucks.

One Comment leave one →
  1. Lidia Thompson permalink
    March 13, 2021 23:18

    Thank you Valerie for your continuing dedication to M.E.

    It’s possible that the kind of organisation that is needed to change the narrative on ME, might actually have just been formed. It’s called, “The long Covid Alliance” and is based in America.

    Over 50 organisations have joined to date, including our own UK-based ME Association.

    The articles that are posted on their website are excellent. There are many statements within these that make it clear that there is likely to be a link between Long Covid and ME/CFS.

    The $1.1 billion recently alloted to Long Covid research might also be a game changer especially now that many prospective researchers have said that they will be using ME/CFS patients in their control groups.

    Here are the associated links:
    1. https://longcovidalliance.org/
    2. https://www.healthrising.org/blog/2021/02/27/long-covid-chronic-fatigue-syndrom-taylor/

    Here’s hoping!
    Best Regards, Lidia Thompson

    Like

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