Read on Twitter
I'm not hopeful the emergence of Long Covid will inevitably lead to better understanding/recognition of ME/CFS. 1/9
There is, as we know, entrenched ignorance/prejudice about ME/CFS in the medical profession. Most of us also know from personal experience that this has trickled down to the general public, often via the media. 2/9
Therefore, the clinician-patients who have done much to raise awareness of LC cannot be relied upon to do the same for ME/CFS, despite obvious clinical and pathological overlaps. They might even have sought intentionally to distance LC from ME/CFS. 3/9
By not mentioning ME/CFS at all in its recent guidelines for Post-Covid Syndrome, NICE has clearly signalled that the medical establishment does not want people thinking they are the same. 4/9
Furthermore, there's no reason to think LC researchers - who probably share clinicians' ignorance/prejudice about ME/CFS - will automatically apply their research findings to ME/CFS. 5/9
GPs (in the UK) won't be allowed to prescribe any medications which are developed specifically for LC to people with ME/CFS - assuming they're even aware of the connection. 6/9
And the layperson who has LC and is unfortunate enough to develop ME/CFS cannot be expected to shape health policy or influence public opinion to a significant extent. 7/9
I hope that I'm wrong, but living with a neglected illness like ME/CFS for many years has taught me not to expect too much from mainstream medicine. If anything positive has emerged from the pandemic for ME/CFS patients... 8/9
... it's the opportunity a small band of dedicated ME/CFS researchers around the world now has to study ME/CFS developing in real-time. The big LC research breakthrough could still end up coming from the ME/CFS scientific community... 9/9
