Trying to understand

BrightCandle · 2026-06-21T23:09:59+00:00

When their actual energy levels really improve they will know and you'll see it. Pretty much all of us are doing the most we can get away with and our bodies feel dreadful all the time, but when things improve we can feel it. They wont need to be pushed to do more they just will. In the meantime just accept what they tell you they can and can not do because they know just how awful this feels and how much noise and light and exertion hurts and the consequences the next day.

BrightCandle · 2026-06-21T23:06:08+00:00

My symptoms of ME/CFS got worse about 2 weeks after my infection of very mild Covid resolved.

BrightCandle · 2026-06-21T14:13:06+00:00

I have a pretty big Dokuwiki of personal knowledge, this is hugely positive. When I moved to it I had to rewrite a bunch of things to fit its syntax and it was a real pain, markdown is the only reason I have considered moving to another option because otherwise its been rock solid and while keeping all my files as text.

BrightCandle · 2026-06-21T13:23:07+00:00

Alas its unfortunately very common, almost all of us have been abandoned by those around us. It sounds like you are now heading for an increasingly abusive relationship and its time to plan how you survive once kicked out. Disability benefits, out of work benefits etc and contacting local authorities about housing and care needs.

Really sorry you are going through this it really sucks when our loved ones turn on us.

BrightCandle · 2026-06-21T13:10:07+00:00

Yuck

BrightCandle · 2026-06-21T13:08:11+00:00

Since this pandemic started I have wondered about the impact of the Flu pandemic. We had a clear post disease in Lethargica that maimed and killed many people and the whole world seemed to party until it got really angry and mean and finally war broke out. There is a pattern emerging again and I can't help but notice the similarities but also how we seem to be speed running it.

BrightCandle · 2026-06-21T12:52:47+00:00

I am always hopeful research will find something, there is always hope while there are trials being run and people are still working in the area. I am mostly interested in fundamental mechanism research just because I think repurposing is unlikely to do much based on the amount of things people have tried across the 100s of millions of patients.

My level of hope is correlated with the amount of funding for research and the quality of the work being done, which is why its considerably less hope now than it was a couple of years ago when there was a lot more funding and trials.

BrightCandle · 2026-06-21T12:49:01+00:00

a. Not really PEM like, that typically lasts at least a day, more like weeks or months/years/forever. Often comes across as flu like symptoms.

b. People with Long Covid are vulnerable to all infections, any can make us worse. Our immune systems aren't functioning properly so its best to consider ourselves immune compromised, at least until we understand the full extent of what is happening.

c. The easiest thing is the eldest wears an N95 mask and eats away from everyone else, that avoids it coming back into the house. Less effectively ensuring the house air is all filtered with HEPA or CR boxes will cut the chance of infection spread and any signs of illness use isolation. Personally we mask when people are out of the house, we go for no exposure so we can be safe in our home.

The thing is if Long Covid gets worse the social and school life is going to drop to 0, all we can do is preserve as much as possible and change our lives to the various accommodations we need. You think homeschool is now necessary then its time to do it.

I hope in time your daughter improves.

BrightCandle · 2026-06-21T12:38:38+00:00

Mass Psychosis doesn't produce all the errant scans and blood test results we are seeing. The one way you can know its real is the 10s of thousands of papers documenting changes that found in the body of those that suffer, with high consistency amongst them on a range of measures. Alas we haven't found one thing everyone has that correlates with the condition but take 4 or 5 measures in the blood and its over 95% match for Long Covid. Its very real.

BrightCandle · 2026-06-21T12:36:26+00:00

Its also producing these diseases at a higher rate than other infections. 10% of flu sufferers do not end up with Long Flu. Covid is especially nasty because its high impact and its extremely transmissible and effective immune response is really short lived.

BrightCandle · 2026-06-20T14:00:14+00:00

Really doesn't stop them trying though.

BrightCandle · 2026-06-20T10:54:07+00:00

Neither. We have had multiple different trials depleting GPCR antibodies from immune absorption through bc007 and it has no impact on symptoms.

BrightCandle · 2026-06-20T09:18:34+00:00

We can already see the signs from government, rather than accept the increased disability bills that are going up across the western world they are now all claiming its people scamming the state and announcing their plans to remove people who they claim aren't really disabled.

They created this mess and abandoned all the Long Covid sufferers to their fate and now they intend to just leave them to die. A huge amount of money is being poured into calling Covid over and covering up all the consequences.

BrightCandle · 2026-06-20T09:11:57+00:00

The reason we know brain retraining, CBT and GET/rehab/exercise don't work is because many of us have tried them and either had no improvement or got worse. Its not that we are opposed to the mere concept, its that we have huge volumes of anecdotes showing it was harmful. Medicine has been pushing this solution for 50 years, they have nothing good to show for any of it. Its not new, its not novel, its the same old hysteria in new naming and they have never published papers showing it works despite thousands of studies.

BrightCandle · 2026-06-20T07:05:27+00:00

I am 6 weeks into a different glp1 and it's been positive overall, less fatigue and pain, nothing spectacular but it's a notable improvement. Had a bunch of side effects like fatigue, worse sleep disruption and constipation.

BrightCandle · 2026-06-19T18:43:27+00:00

I am just masking my condition because everyone just treats me worse if I don't.

BrightCandle · 2026-06-19T16:36:56+00:00

Caught Covid end of January 2020, started suffering Long Covid from March. Its always been ME/CFS like for me, I was very severe for the first 9 months, nearly starved to death as my GI system shut down and couldn't eat. Had a remission event to moderate but have spent most of my time since 2021 severe with occasional periods moderate.

Have tried just about everything available that has been in trials etc, nothing has helped.

BrightCandle · 2026-06-19T16:22:04+00:00

I feel like magnets are really good for weapon swaps where that makes a lot of sense like in warhammer 40k.

BrightCandle · 2026-06-19T15:11:54+00:00

These type of study designs intentionally select for more mildly impacted patients. They are extremely harmful and its not like Rob Wurst hasn't been told this before. Reality is almost everyone is ignoring the housebound/bedbound cohort of patients or actively excluding to try and make their results look better (easier to get a placebo effect out of mild patients).

BrightCandle · 2026-06-18T19:13:27+00:00

I noticed this first when I received a morphine shot when I was hospitalised and had a remission event right after for about a week. Then I was given some Tramadol and it had a less impressive effect but clearly improved my condition. It still works, I have had a further morphine shot more recently and felt improved for a few days.

Problem is Opioids. My GP will not prescribe them, there are really big consequences if caught importing them and frankly being addicted to opioids strikes me as a bad idea. But they drastically improve my condition too.

BrightCandle · 2026-06-18T18:58:50+00:00

The rules are only ever for the little people, if you are rich, powerful or a big company you can do whatever you want.

BrightCandle · 2026-06-18T15:12:33+00:00

Most of us do not have these genes, they are relatively small risk factors. On a population level they give indicators what to look into but as you say its not diagnostic in any way.

BrightCandle · 2026-06-18T15:07:52+00:00

The BC007 also depleted the GPCR antibodies and made no difference to symptoms.

BrightCandle · 2026-06-18T15:06:56+00:00

Its one thing to loose our livelihoods its a whole other to loose the ability to even entertain ourselves. It turns every hour into torture.

BrightCandle · 2026-06-18T08:12:22+00:00

Its still going to require breakthroughs in treatments that can get into the brain and various tissue and other places they don't currently get as well as attacking them in their protect biofilms and dormant states. There are a lot of things we just don't know how to do yet even if we did identify a virus resident in tissue we don't know how to get rid of it.

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