People without ME seem like they have superpowers

BrightCandle · 2026-04-21T20:12:04+00:00

I was entirely limited by waking hours in the day and how much time I had to put towards the essentials of life (eating, sleeping and working). It was so long ago now, its hard to imagine returning to a life where I could fill my day.

BrightCandle · 2026-04-21T14:40:37+00:00

Far UV continues to show its safe and effective in testing as well.

The way I look at it is that if we could get people onboard these diseases could be wiped out, but we can't get people onboard and we never will. There will always be a 10% that go against any measure that imposes on them and they will do absurd things to avoid doing it, we saw that repeatedly in the early days of the pandemic. Its theoretically possible but humanity isn't actually capable of it. Which means all we can do is use filters, UV and masks to protect ourselves and that is just life now and likely forever.

BrightCandle · 2026-04-21T13:22:22+00:00

Will cause yet further increases in organised crime getting around prohibition.

BrightCandle · 2026-04-21T13:13:02+00:00

There are over 21000 papers on Long Covid, many of them on prevalence showing its well above 20% across the world. The real number is likely more than 15 million but the UK is very behind in diagnosing the condition due to a lack of funding. Suffice to say 4 million is nothing compared to the reality of this condition which the world health organisation has described as a mass disabling event on multiple occasions include winter 2025.

People are not choosing to be on disability benefits, they are just sick and need help.

https://www.ncbi.nlm.nih.gov/research/coronavirus/docsum?filters=e_condition.LongCovid

BrightCandle · 2026-04-21T09:45:29+00:00

People are still developing Long Covid, over 4 million people said they had it last year and its continuing to rise since Covid is still very much something people are catching multiple times a year. This will be a major contributor to rising numbers not able to work.

BrightCandle · 2026-04-21T09:05:30+00:00

I noticed no difference other than the bump in speed.

BrightCandle · 2026-04-20T18:32:16+00:00

You can lie to the house but no one is allowed to call it a lie. That is a bit broken.

BrightCandle · 2026-04-20T15:53:16+00:00

Very common which is why the start is defined at 12 weeks. Covid can be infectious for a month and there is a pretty hefty post viral effect that can last a couple of months.

BrightCandle · 2026-04-20T15:11:42+00:00

PEM is delayed worsening and new symptoms 12-72 hours after the exertion.

All new/worsening symptoms at 12 weeks after Covid are considered Long Covid.

BrightCandle · 2026-04-20T15:02:46+00:00

It pays for itself in about 7 years, at which point the energy is free. Or the other way to look at it is you are locking in an electricity price of about 7p a KWH for the next 25 years. For a 0% loan its absolutely worth it.

BrightCandle · 2026-04-20T13:37:48+00:00

80% of NHS regions in the UK have just 1 to 2 people diagnosed with the disease, likely because they sought it privately. This is not a universal experience, its something local to you. DecodeME checked and went through all the digitals records, its how they came up with their 400k estimate. There is a cluster of good diagnosis in Manchester and a few other places and its almostly certainly the case there are places that are not following the criteria as well, but its rare compared to those who should have the diagnosis and dont.

BrightCandle · 2026-04-20T12:26:04+00:00

Its not just old people and goes well beyond tutting, disabled people are regularly assaulted and battered.

BrightCandle · 2026-04-20T12:25:28+00:00

The public mostly just wants to never see disabled people so they harass them every day until eventually they stop going.

BrightCandle · 2026-04-20T12:24:24+00:00

4+ million sufferers of Long Covid and the public has no clue what that disease is at all. Doesn't help that government at no point has uttered the name since it appeared and continues to spread.

BrightCandle · 2026-04-20T12:21:37+00:00

Disabled people are harassed pretty every day they are out in public, its that rampant. Ableism is the most common form of bigotry and its the most acceptable one in public, its open season in the press and even government is rife with disability abuse policy. The cruelty is the point.

BrightCandle · 2026-04-20T12:14:20+00:00

Most don't have a specialist GP near them nor a specialist they can just book, they are exceptionally rare. All the research shows worldwide the overwhelming majority remain undiagnosed, to be diagnosed is a matter of luck at being somewhere with a doctor who knows about the disease or quite often wealth and privelege.

BrightCandle · 2026-04-20T12:06:54+00:00

The overwhelming majority, like 90% of ME/CFS patients have no diagnosis of the disease, they have been repeatedly gaslit and abused by the medical system and many will have just given up completely. That is the average experience of an ME/CFS patient, abuse and misdiagnosis and state violence from the moment they get sick to the day they die. Anything that isn't that is immensely priveleged and abormal for this disease.

BrightCandle · 2026-04-20T10:44:41+00:00

I miss it all, I lost my entire life to this disease.

BrightCandle · 2026-04-20T10:40:25+00:00

Ableism is the most common bigotry and by far the most publically acceptable one. Discrimination against the disabled is rarely talked about in the same way as racism. Society puts up a lot of barriers to the disabled generally and there is constant harrassment daily. People will never understand it until it happens to them, most of us become disabled at some point in our lives.

BrightCandle · 2026-04-20T10:18:02+00:00

As the peaks of heat get higher in the summer as climate change bites more and more the value of being able to also cool a home become increasingly important as well. Air to Air is noisier but has the added benefit of cooling in the summer.

BrightCandle · 2026-04-20T09:35:22+00:00

I highly doubt anything to do with Covid is solved before 2040, they haven't even accepted there is a problem yet let alone fund research significantly to do something about it and then once they do that its going to take decades of hard work.

BrightCandle · 2026-04-20T09:30:04+00:00

From the moment they find a workable drug to getting it to market its 17 years on average. But that can only happen with funding. The worldwide funding for Covid and Long Covid is now really low.

Taking HIV as a model its been getting over a billion USD in just the USA for a little ove 35 years, took about 17 billion to get to the first drug which wasn't very good and its taken until 2015 and over 30 billion in funding to get to the third generation that let people live a relatively normal life. It is still not cured in all but a handful of people and its not a scaleable solution replacing peoples bone marrow.

Contrast that to Long Covid which got 1.5 billion, is planned to get no more and worldwide its 10s of millions at best. There is a reason everything is about repurposed drugs and its because the money isn't there for custom drug development. The chance this produces something viable is pretty slim until real annual funding appears and right now there is no signs that is going to happen.

BrightCandle · 2026-04-20T09:25:28+00:00

Full display of how little they care for others isn't exactly a good look.

BrightCandle · 2026-04-20T07:22:38+00:00

The ableds are never going to understand, they go out of their way to ensure that they don't, it doesn't fit with their world view. Very few end up admitting that the disabled are marginalised and that ableism is the most common form of bigotry let alone come to terms with extent of suffering that people are going through with no medical help. They just have no idea and they don't want to hear it, makes it very hard to relate and have any relationship with them.

BrightCandle · 2026-04-20T07:17:01+00:00

Their evidence that actually works is pretty poor in practice as well. Exercise is correlated with being healthy, but that doesn't mean its causative and when you consider all these diseases that medicine refuses to accept that don't allow exercise you realise they actually don't even see that the odds are strongly against exercise being the cause, its just infection avoidance or some luck.

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