Quotes about the BPS model of ME/CFS as a mistake not to repeat with Long Covid

[rvallee]

Bit of a mouthful thread title, but I have seen many references in the last few years that explicitly blame the biopsychosocial model of ME/CFS as a historical mistake, a failure that should not be repeated with Long Covid.

Sadly, though, it is being repeated. But one of the main tropes of BPS ideologues and their supporters is that only a small vocal minority are in opposition to it, and do not represent the majority of patients. As best as I can tell, this sentiment is nearly universal: the biopsychosocial model of ME/CFS has been a massive failure and complete change is needed.

Far from it being a small vocal minority who object to the psychosomatic model of ME/PVFS/LC, it is almost universal within both the LC and ME communities. I have not to this day seen a single objection to it from long haulers. Aside from, maybe, Paul Garner, whose status is... conflicting.

Mentions of the historical failure of how medicine handled ME/CFS have been featured in newspapers, in legislatures and panels and roundtables discussing Long Covid. So this is a thread that aims to keep track of such quotes in public forums, whether news media articles or from authority figures.

The format I will follow is:

The actual quote

A reference to where, when and who said it, either a URL to the article being quoted, or an embedded tweet featuring it.

 

[rvallee]

anyone that has suffered from ME/CFS will tell you there aren't the services there... so we we're building on very dangerous foundation

 

[rvallee]

Labour MP for Putney Fleur Anderson compared the battle to highlight long Covid to a past campaign to highlight how chronic fatigue syndrome, also known as myalgic encephalomyelitis, had not been taken seriously enough

Ms Anderson MP said people with ME 'have been underestimated, not believed, not supported, when they have gone to their GP they have been told the wrong advice, actually advice that makes their ME worse

 

[Sean]

If this is to be a thread of record then it is probably worth taking screenshots or making PDFs of critical stuff and posting it here for posterity, in case it is removed/altered at the quoted source.

 

[rvallee]

I'll see what I can manage in terms of archiving some of this, but it'll take me a while to find an easy workflow.

Meanwhile I will try to restrict the quotes from figures of some authority, by professors or physicians, or in an official setting like legislatures, committees and conferences, but will make an exception for articles like this, where the historical failure of the BPS model of ME is the topic and published in a high profile media.

The underinvestment follows decades of underfunding for research into post-viral illnesses. Myalgic encephalomyelitis (ME), also known as “chronic fatigue syndrome”, affects 250,000 people in the UK.

Worse still, in the UK most of that funding has gone towards studies that understand post-viral illnesses as primarily psychological – rather than physical – and therefore requiring psychological treatments.

Following this debacle, alongside the growing biomedical research into long Covid, we finally seem to be past the dark days of psychologising post-viral illnesses. But much damage has been done; research is decades behind where it should be.

The Guardian: I have long Covid and despair that the UK government ignores its blight