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Mark
Welcome to the "hosehead" community. I have pretty severe apnea and had no idea. There's a forum which provides great information and advice. I haven't been there a lot but have been impressed with the quality of information/ advice. I can't remember the site but will come back and post it.
Thanks...I'm clearly going to have to find out more about apnea experiences in the coming months.
I think you're spot on in observing that symptoms like sleep apnea may be comorbid or they may be misdiagnosed as ME/CFS - both are possible. The same's true of a few other missed diagnoses I think. Which is part of what makes it so hard to untangle everything. But I think the starting point has to be to diagnose and treat what can be treated and see what's left.
And pretty much everything I've read from "hosehead"
experiences in ME/CFS has not been encouraging; loads of people with ME/CFS seem to not be seeing much benefit from CPAP.
In my case I think I'm pretty much ready to give up on the CPAP after a few months of trying to last a full night with the mask on - particularly because in the last few days, now that the nasal spray has got to work on the polyps, I seem to be sleeping OK without it. The way it looks right now is that all that was needed was this spray to sort out the polyps. The CPAP was just a sticking plaster but it didn't address the cause. Nobody appears to be the slightest bit interested in the cause of it all and nobody seems interested in anything outside of their narrow specialism. Just wear a mask in bed for the rest of your life and we can get you out of our surgery, that seems to be the game here.
What gets me about all this is that I have had to do all the work on this myself. I would have got nowhere if I'd left it up to the docs, and I've had to fight against the docs to get the solution that seems to be working. I requested the sleep study referral myself, none of my GPs ever thought to do this. Then when it was confirmed, they weren't at all interested in exploring the cause of it or attempting to cure it; the sticking plaster of CPAP was all they had in mind. I had to battle to get a referral to a nose doc because I was sure that would be very significant. Then the nose doc seemed uninterested in the polyps but at least gave me the right spray for them - but he told me nothing at all about what the polyps might mean or how they might fit into everything else. It took a google session to find out they are a cause of sleep apnea and can be a consequence of allergy to airborn fungus. And yet after just a week or so of this spray, my rhinitis has cleared, my nose is clear when I wake up (which is all unheard of, it is normally blocked solid and has been for the last decade or more) and I don't appear to need the CPAP at all to sleep well, now that the polyps have been dealt with. Why could we not have done all that 6 months ago? Or indeed 20 years ago? That might have saved me 20 years of grief, and would have certainly saved the NHS an awful lot of money.
I have high hopes for Julia Newton as she is science based which gives credibility not only to her but also our patient community.
Absolutely, me too. She seems to be going through things systematically and building up the evidence bit by bit in a way that should make a big difference in the long run.
What she's done so far in relation to sleep problems and POTS appears on the face of it to be slightly misleading because she appears to be saying these people with sleep disturbance or POTS don't actually have ME/CFS. That's true for many many people I'm sure - they just have the ME/CFS diagnosis because their docs failed to diagnose those conditions and basically gave up on those patients - but as you rightly noted, these can be and often are comorbidities or perhaps symptoms resulting from ME/CFS. I think that nuance has made a few people a little cautious in embracing what she's said about sleep and POTS.
But strategically, the thing to do with these symptoms is get them acknowledged in the mainstream as very common issues in ME/CFS patients, get them treated in the normal way, and then if they turn out to be atypical and don't resolve under the usual treatment then we can take it from there...and we can get those who
are 'cured' once these things are addressed out of the 'wastebasket'...then what is left in the basket will be easier to study.
There's enormous value in having this clear and high quality evidence that very large proportions of those diagnosed with ME/CFS actually do have diagnosable, testable, treatable conditions like POTS and sleep abnormalities. There are loads of ways this benefits us all...indeed, in my case, her study that found such a high proportion of ME/CFS patients with sleep abnormalities was one of the things that prompted me to press my GP to refer me for testing...so I have a lot to thank her for!
