@Chrisso said in Post viral chronic fatigue: @Chrisso Hi everyone I'm new to this forum ,thank you for letting me join!I am not sure where to begin - I was diagnosed with Ross River Virus in 2018 ,& since then my health hasn't been the same .I believe I suffer from a form of Post -Viral Chronic Fatigue .I have had a series of tests bloods, sleep apnea tests etc only to be told nothing .I'm in the process of getting a referral to a physician specialist in infectious diseases .I've seen 3 G.P.s & a Naturopath to no avail .I used to be very & healthy active ,but now its minimal & have to pace what I do ,I'm in my early 60s and still work full-time .I am taking Melatonin 2mg at night to assist in sleep quality .Can anyone shed light on my situation ,or have similar experiences ...?Thank You -Chrisso Hi @Chrisso and welcome and good luck with your new GP! Fingers crossed you can get some relief happening

@Trae said in Hello!: Hello! I was diagnosed almost 20 years ago after a long and windy road ( which I’m sure is a familiar story). Hi @Trae yes a very familiar story. I have been the same, over 20 years and now I realise actually even longer than that, after an illness with glandular fever when younger. I was never right. Yet it was 22 years ago after a horrid “flu” that knocked my socks right off! I hope you have some support around you? Welcome to here

@Kristy said in Hi my name is Kristy mother of five diagnosed a couple of years ago used to be a hard worker and sociable I'm age 42 feel like 21 but body and brain 80yo looking for some friends who understand what we are going through : Hi is anyone from Tasmania or are there any good support groups in Melbourne ? Hi Kirsty and welcome! Wow a mum of 5 kids it must be so difficult for you everyday. I unfortunately do not have any kids and I know how hard it is for me without them! So I really feel for you. You should be very proud of yourself as you are doing an amazing job with a horrid illness. This is a good place to be, as we all understand each other. I really hope you have some support from family and friends?

@river Those are really cool pill containers - that's a top idea Noting that I'm completely unqualified to comment on such things, but it could even be a cool business idea

I barely slept last night, no particular reason, nervous system just wasn't cooperating. Feel horrible today, all the symptoms flaring. I've been doing better overall but there's nothing like a night of sleep disruption to set me back. Bleh!

@Chris said in GET V HIIT: Thanks for your insights. On reflection I think I’m using up my energy envelope with work so there’s nothing left for exercise. I even get PEM after strenuous days at work without any exercise. I’m a bit stuck as I feel I need to work to make ends $ meet and that leaves me with nothing left. I know people say just leave and get another job. Easy to say but hard to do at my age. Thanks. Chris Not easy mate. That's for sure. All the best with it.

My experience was similar to Katt’s. I was on 4mg and then 6mg for a while, and while I think there may have been a little benefit it wasn’t enough of a difference to be worthwhile. I also had side effects when increasing and decreasing.

Zip -A-Dee-Doo-Dah!

@river said in A thread for being grateful for things : Thank you for creating these threads @Daffy_Dave - great idea. I totally agree about the Internet and technology - I'm so grateful for all the opportunities for connection and support that it makes accessible to me, and many others with chronic illnesses or disabilities. Today my "positivity" share is the growing realisation that the new supplements I'm taking are making a much more significant difference to my functioning than I ever would have thought possible. I almost don't feel like the same person as I did a few weeks ago - it's wild. It's also bittersweet because there is still so much uncertainty and it's making my imposter syndrome real bad - but at the same time, it's validation and in some ways proof that I have real mitochondrial damage and that compensating for that might actually give my body a chance at healing. I'm in uncharted waters... But land is in sight Great news that you are noticing an improvement! I am excited and hoping that you will continue to see improvements..... and eventually reach the land! ️

You made some good points river and have presented a different point of view. Well, done!

@Loulou If you've got the spoons, I'd very much be interested to know where you had/have difficulties - "guide to uploading photos" is on my list of things to do, and all input would be useful (but only if it won't take energy needed elsewhere). Good luck with the uploading, and let me know if you have any trouble

@Trae great article, thanks for sharing! I hadn't seen it before. I really hope that something positive comes out of the covid research, for all of us.

@SandyAtHome I so relate to this!

@Looch No shame in the occasional blooper I find my brain sometimes substitutes what I want to type with another word entirely (often seemingly unrelated!) Great to hear your specialist is familiar with the NCNED's work - and best of luck with your LDN - I very much hope it helps (I have heard of stories of almost-full recovery - they're very rare, but fingers and toes crossed that's what happens with you ) I've popped up an LDN thread here: https://community.emerge.org.au/topic/197/low-dose-naltrexone-ldn-for-me-cfs for all that are interested.

just wondering is there anybody caring for someone who i would classify as severe (non verbal, no external stimuli, no touch)?

@SandyAtHome Hi Sandyathome, What I have found to lessen the duration of "a crash" I have intermitten rest periods through the day by meditation when I can. I try not to overuse the energy parcels we have for the day as we end up crashing for longer. I've learnt to really listen to my brain & body & give it a rest for half an hour when its needs it. You might try blackmores vitamin B complex supplements for a physical boost or a coffee or tea or cacoa with MCT melrose (liquid coconut oil) (morning only as caffeine effects sleep) from chemist warehouse for a mental boost. Regards Vinney

Testing again

@Tess that gave me a laugh!

Thank you @Daffy_Dave .

@river I enjoyed dreamloops, thank you. All tracks but one hit the spot (#3 had a bit too much going on). One of my recent discoveries is Kate Rusby, a folk singer from Yorkshire with a very grounded adventurous streak. Most of her work is a bit livelier but her slow, almost metronomic renditions of traditional songs work on me like lullabies: Bogey's Bonnie Belle The Witch of the Westmorland Night Visiting Song Hunter Moon (an original composition of hers, metronomic but not quite as level as the others)