Has #pwME or #LongCovid managed to get oxygen therapy at home via the NHS?

#NEISvoid #LongHauler #MyalgicEncephalomyelitis
Why isn’t anyone studying whether home based oxygen therapy can help #pwME or #pwLC?

I see loads of studies of HBOT showing it helps & other studies saying we’re hypoxic. But HBOT studies annoy me because HBOT therapy *is not accessible* for most people! We need home therapy!
“The now retired ME/CFS specialist Dr. Paul Cheney also used to frequently prescribe home oxygen therapy to ME/CFS patients, even as little as 1 hour of treatment per day seemed to be effective” (from drcourtneycraig.com/blog/2019/2/9/… )
I can only find one study from 2016 on just 3 patients with Fibromyalgia and ME that showed medical oxygen was beneficial.

Everything else is jumping on the HBOT band wagon despite the fact it’s unavailable for most sufferers, especially the most severe pubmed.ncbi.nlm.nih.gov/28282079/
Oxygen-ozone therapy tested in pwME here, published in 2021 mdpi.com/2077-0383/11/1…

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More from @Naomi_D_Harvey

Oct 8
I’ve wondered if Sildenafil (viagra) would be useful for increasing blood flow to the brain in pwME. There are a few studies trying it for increasing cerebral blood flow in vascular dementia & other disorders with promising results.
Seems I’m not the only one to see it’s potential as there was a phase 4 trial that concluded in 2010 for its use in ‘CFS’ to increase cerebral blood flow but I can’t find published results clinicaltrials.gov/ct2/show/NCT00…
Looks like it may have helped somewhat for symptoms on the 42 item fatigue impact score: placebo outcome was -1.5 lower (scale range from 0-142), Sildenafil outcome was -33 (p<.05)
Read 7 tweets
Oct 7
So, I was thinking last night: is there anywhere that #pwME can leave their bodies to science for ME research?

Those who die with ME often don’t even get a post mortem, & if they do, the coroner doesn’t know what to look for.

Is anywhere prepared to accept & study our bodies?
Sorry for being morbid, I’m not expecting any of us to die soon! I just think it’s something that should be arranged just in case. And I’ve never seen a case report or other published materials from autopsy data.
I’ve found a press release from 2017 linking to a brain donation project but I think it’s only for people in the USA meaction.net/2017/03/24/don…
Read 4 tweets
Jul 24
On, quick thread on this.

I saw it this morning and immediately dismissed it a ‘woo woo’. Nothing is likely to cure us. But some things can help. And after looking at the research on this, it actually might be worth a try for those who can afford it 🧵
What the device does is deliver microcurrent therapy (MCT) also called microcurrent electrical nerve stimulation (MENS).

It’s been approved by the FDA for treating muscle pain, beyond that everything is early stage research.
MCT delivers small electric currents in micro amps, across the skin without activation of muscle contractions or noticeable sensations, and its mechanism is different from that of conventional transcutaneous electrical nerve stimulation (TENS) with works with bigger mA pulses.
Read 20 tweets
Jul 22
Ok, so the Your Covid Recovery pages on the @NHSuk website have been updated.

There’s quite a lot of improvements, such as acknowledging long covid, but also some horrors. I’ll go into the problems I spotted in this thread 🧵 buckle in!
1/22
This is the link to the new pages.

I know that parts of it have been designed by different teams of people many of whom are excellent & well informed & I thank them for their efforts.

But I also know they’re not all being listened to 2/22

yourcovidrecovery.nhs.uk
This redesign finally incorporates #LongCovid yay!

There are different sections focussing on different symptoms; fatigue, breathlessness, chest pain etc.

Yet as you will see, it’s pervaded by deconditioning theories relevant to healthy people, not those with long covid 3/22 Screenshot of the title page for Long Covid. A woman is seen
Read 23 tweets
Jul 21
“Abnormal [high] levels of TCA cycle intermediates [succinate & alpha-ketoglutarate] suggest inefficiencies in ATP production that may contribute to the fatigue and post-exertional malaise reported in ME/CFS.” #MyalgicEncephalomyelitis #MECFS
“Increases in α-KG levels have been reported to induce severe metabolic impairment of pyruvate oxidation in the tricarboxylic acid cycle, leading to cell death.

Elevated succinate levels contribute to increased oxidative stress and neuronal degeneration in rat models”
There’s absolutely loads to unpack in this new study, but one of the main takeaways for me is that #pwME should NOT be supplementing with succinate as the subjects in this study already had elevated levels as it’s not being metabolised properly & may be dangerous in high levels.
Read 9 tweets
Oct 2, 2019
This is a poem by @JamieGergen that all dog lovers must read:

We Are Like Elves by Jamie Gergen

I often wonder what we did to deserve dogs.
They, who for generations bring us joy,
who greet us after our worst day of days,
as if we’d just won the greatest prize.

1/8
And ask of us so little in return.
Perhaps it is because we have won a great prize: their devotion.

We, the un-aging companion must seem immortal to them.
We, who will raise their grandchildren’s grandchildren,
before we even show signs of our old age.

2/8
They must think we are ageless, like elves or gods
who summon them food from massive bags
or drop it from our tables, in effortless supply.

We recall their names like the litany of kings.
Rex, son of Astro. Punky, daughter of Rex.
Third in the line of good dogs.

3/8
Read 8 tweets

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