I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words as a template to save them energy (though my words are never perfect nor are they the only words you can use). I’ll collect the links on one page eventually but for now they’ll live in scattered blog posts like this one.
This is a follow up to my quick email of thanks regarding MECFS awareness. The staff member from the Senator’s office sent a quick reply identifying recommending exercise as a problem with the RACGP submission to the MECFS guidelines scoping work.
Side note: absolutely no disrespect meant to the staffer who replied to me but it’s telling that a political staffer knows this and most GPs don’t.
Anyway, I replied with an email outlining my concerns about the RACGP submission. I’m not expecting to hear back from the Senator’s office again; I didn’t request for them to follow up specifically or anything. I’m just hoping some info or the general issue gets put into eg briefing packs for the Senator to work from. (Update: they’ve said they’ll send this to their policy team so they can review it when needed for work on this topic. Score!)
Good afternoon,
Thank you for your continued interest in this topic.
You are correct, exercise is part of the concern. However, the RACGP are not only outdated on exercise, which has been removed from NICE (UK) and CDC (US) guidelines, but on their overall approach. They want GPs to treat us primarily as people with a mental illness, which ignores the biological origins of the condition. A good recent piece of work refuting the psychological approach to MECFS can be found here.
The RACGP says not to use “low value therapeutics” which is referring to off label use of medications, things such as Low Dose Naltrexone (LDN). Taking LDN has cleared up a substantial portion of my “brain fog” and is the reason I’m able to work remotely and keep a roof over my head. These “low value therapeutics” often give MECFS patients a few percent increase in quality of life, and while the RACGP may not consider that “worth it”, those of us who eg move from bed bound to house bound with these therapeutics certainly appreciate our increase in quality of life.
The broad issue with the RACGP response is that they claim to be follow ing the science while in fact ignoring the piles of research (eg new research identifying distinct subtypes) that show MECFS is a biological condition and with further research, we may get significant treatment. We need the RACGP to truly be on board with current research so that they communicate to their members, GPs, and empower their members to fully support people with ME in the latest treatments.
At the very least the RACGP needs to stop recommending GET (exercise) which is directly and often permanently harmful.
Kind Regards,
Vanessa Smith
