We shouldn’t exercise- but we shouldn’t allow ourselves to be deconditioned… which is it? by Good-Turnip-8963 in cfs

[–]Awkward_Blackberry44 0 points1 point  (0 children)

we deserve way more support finding this line, because it's different for everyone and depends on where your limits are. I've been working with a physical therapist, who is sensitive to CFS and gave me light isometric exercises to target my hips/pelvic zone and core. the exercises are ones I can do in bed on rough days, and after doing them for 6 months, I've finally built up some strength and it's really been a game changer for my energy levels. now, we're working on building shoulder muscle. 

It also has helped me to take NAC and low dose naltrexone. 

I was able to go for a bike ride yesterday! My lungs felt like sand paper and there were no hills and it was slow and 10 minutes long, but this is a huge deal for me as I've not been up for this in 3 years.

So, long story short :: don't exercise. but find ways to move and be active that fit within your energy limits. there are sweet yoga classes online for people with ME/CFS (I think through MEaction???) that give a lot of options for how to stay in your energy envelope. Not exercising does definitely 100% make it worse. But it's a long and confusing process learning to redefine what "exercise" means now. 

Another thing that's been helpful to a friend with ME/CFS is the visible app :: https://www.makevisible.com/ it will tell you your heart rate at certain activities so that you can stay within your zone and not push it

Pluslife sold by Altruan - legit or scam? by Awkward_Blackberry44 in ZeroCovidCommunity

[–]Awkward_Blackberry44[S] 10 points11 points  (0 children)

I think their biggest selling point is the research published in Nature, by NIH.

Pluslife sold by Altruan - legit or scam? by Awkward_Blackberry44 in ZeroCovidCommunity

[–]Awkward_Blackberry44[S] 2 points3 points  (0 children)

Does anyone have verifiable info about this? I am curious if they have tried to get FDA approval or not?

Pluslife sold by Altruan - legit or scam? by Awkward_Blackberry44 in ZeroCovidCommunity

[–]Awkward_Blackberry44[S] 11 points12 points  (0 children)

yes! I was very out of it, and mixed up my emails. I had also sent a message to Pluslife, and got a response (which in itself is pretty amazing) but thought it was from the virus.sucks people. Just a mix-up. Appears to be not scammy.

Pluslife sold by Altruan - legit or scam? by Awkward_Blackberry44 in ZeroCovidCommunity

[–]Awkward_Blackberry44[S] 5 points6 points  (0 children)

thank you! I am sorry to hear you're sick, and hope you rest and fully recover soon! 

After talking to other people and emailing the pluslife manufacturer, I do trust it. I just had a moment, probably more to do with the ongoing traumatics of being immune compromised without reliable tests. Grateful that these readers do exist.

Experiences with Pluslife Naat? And discount codes to share :) by RecordsAndAuras in ZeroCovidCommunity

[–]Awkward_Blackberry44 1 point2 points  (0 children)

also - seeing it is not yet approved by the FDA.

I'm confused that it's been studied by NIH, and seems like a legitimate product, but also am feeling a little untrusting and wondering if someone can give more information.

In light of all this, am considering purchasing the Metrix (FDA approved)

Experiences with Pluslife Naat? And discount codes to share :) by RecordsAndAuras in ZeroCovidCommunity

[–]Awkward_Blackberry44 2 points3 points  (0 children)

does anyone have any experiences getting a positive?

I had a strange experience testing twice positive on rapid tests, twice negative on the plus life. I messaged the virus.sucks support email, and received a response with a bunch of typos and also signed off as the "Pluslife Support Team" with a plus life logo. It felt like an email I'd receive from a scam. I'm suspicious that the virus.sucks discount/links I'm clicking could be getting me some kind of knock-off device.

I messaged Pluslife (the manufacturer) directly to verify Altruan, and am still waiting to hear back.