Likelihood of Research Discovering Effective Treatments?
LJ_64 last edited by
I was wondering if anyone has any idea how likely it is that the increased funding and research that is going towards long covid will result in any effective long covid or ME/CFS treatments being developed in the next 5-10 years? I've read a lot of articles about how research is happening, but as usual scientists are hesitant to make any sort of public predictions on outcomes before they have data to back it up.
I know that no one can give me a certain answer to my question, but I would be interested just to hear people's thoughts as it's something I spend a lot of time thinking about.
emsarah last edited by emsarah
@LJ_64 I hope so. I read those Long Covid articles and feel kind of...weird... left out but sort of hopeful in the back of my mind that maybe it will lead to something. I fully appreciate I am really new to this though and realistically I have only been unwell as long as people with Long Covid, so there's much wisdom from people who have had to deal with this horrible illness way longer!
Have you seen the Open Medicine Foundation or Solve ME on YouTube? There have been a bunch of research updates lately (haven't been well enough to watch them all the way through but I've read some summaries).
LJ_64 last edited by LJ_64
@emsarah I haven't seen those before, I'll check it out.
Honestly I find reading about research into ME/CFS treatment really hard sometimes because it feels so emotionally high stakes (if that makes sense?). It seems to trigger fight or flight mode in me so I have to do it sparingly and try to stick to brief articles.
I'll add it to the list for when I'm up to it though.
emsarah last edited by
@LJ_64 Yes I feel like that at times too. Or else I feel closed off, that it feels so small and far away what's the point?
But the OMF do really good work, they have a branch in Melbourne actually! If the long videos are too much, they did show highlights on Instagram too (the series was during May) or I often go to Reddit and usually someone writes a good summary of the posted videos.
Jeshyr last edited by
Of course that old saying "Prediction is hard, especially about the future" is still true, but I think that there's a very high chance that we will at least get the sort of more-or-less-effective treatments that people with MS and immune arthritis have access too (I don't mean the same type of biologics meds, I mean meds with the same sort of efficacy). Those medications don't cure the diseases, and they don't work for everybody or work all the time, but for most of the people and for most of the time they convert what were very very severe very crippling diseases into what are much less severe much more manageable diseases.
It's definitely true that I've been sick for nearly 30 years now and I'm more hopeful about the future in terms of treatments/management options/etc NOW than I have been at any point since I've been sick
Hang in there ️
LJ_64 last edited by
@Jeshyr Thanks for your input, I appreciate it. I'm pretty young and have only had CFS for a few years but I'm really struggling with the idea of an entire life of this level of suffering. 30 years sounds really tough, you have my empathy as someone with only a few years of this illness.
It's a bit weird of trying to hold onto the fact that in the future I might see improvements, and I might not, and things might also get a lot worse, all at once. I've never done well with uncertainty, and living with CFS feels like the ultimate exercise in the unknown. I tend to resort to a kind of brutal pessimism in these kinds of situations which isn't necessarily a sustainable long term strategy. So hearing other people's perspectives is helpful.
emsarah last edited by
@Jeshyr that is encouraging you can see that happening from your long experience
@Jeshyr Yes I agree. I’m feeling more optimistic, but still need to be patient.
DJamie last edited by
@LJ_64 Looking back I've probably been struggling with ME most of my life, but was only diagnosed in 2018 as my body just said NO
Don't give up just yet. I had many really great years before my body decided enough was enough.
I fully appreciate where your at. It takes time to adjust & feel ok with this condition, & there is no time limit on that. It takes the time it takes.
This community helped to validate my experience & that has gone a long way to helping me feel like ok about the enormous changes to our lives we have to face with this condition.
Have you read about the research the Brisbane Uni is doing with ME/CFS? Google 'calcium channels ME/CFS'. It's a lot to read & it may take you time to get through it, but there is some hope there.
The researchers up there feel it has to do with a receptor in cells that has decided to stop working. This may not be the case for everyone with ME, as all bodies function differently, so read it with some scepticism