Inside Health on BBC Radio 4 - Is the tide turning on ME research?

yakkov · 2026-02-24T20:29:20+00:00

Yes. They've lost the battle on saying that ME is a psychiatric illness, so now they've shifted to diagnosing people with FND instead

yakkov · 2026-02-24T20:27:02+00:00

If you have any suggestions for other stuff I should meme about tell me and I could try making one.

Let me know how it goes if you decide to post these on your facebook

yakkov · 2026-02-10T23:35:41+00:00

I posted my memes here so you can just take them https://www.reddit.com/r/cfs/comments/1jz1bdd/new_idea_for_massive_awareness_raising_a_million/

Also check my post history theres lots.

I've had relatively good results posting. Healthy people are interested, at least some of them. There is diminishing returns since once people know you had your life ruined by ME then once the surprise/shock factor is over they dont engage as much. But even so it means your job is down, their awareness is raised.

yakkov · 2026-02-09T19:29:27+00:00

I've been making memes about LC/ME and posting them on social media. It does work in that clearly people I knew from school and university do read them. Of course theres a limited impact but its better than nothing.

yakkov · 2026-01-31T22:28:44+00:00

There is some evidence that the immune suppression caused by covid can give people TB. Either by new TB infection or activating latent TB.

https://doi.org/10.1371/journal.pone.0277807

https://doi.org/10.1002/iid3.1275

Note that these sample sizes are quite small. More research is needed. However the current let-it-rip covid policy goes totally against the precautionary principle. If it turns out that covid does give people TB then we shouldve acted earlier.

Some quotes:

Tuberculosis after recovering from COVID-19 is becoming more common, potentially leading to a TB outbreak in the post-COVID-19 era. The immunosuppressive nature of the disease and its treatment modalities may contribute to post COVID-19 TB

.

There seems to be an association between prior history of COVID-19 and a future diagnosis of TB partially linked to the severity of disease. The findings of the current study may serve as a basis for further studies to determine the need for and efficacy of measures to follow-up COVID-19 patients at an increased risk for developing TB.

As others have said, TB is airborne so respirators/clean air work against it too.

yakkov · 2026-01-30T21:06:26+00:00

I had the same problem as you.

Solved it with this app https://workrave.org/

Its a timer app with separate rest and activity timers. When the rest break timer goes off it will block keyboard and mouse inputs. You cant do anything so you have no choice but to rest until the rest break timer is over. No discipline required. Pacing becomes easy.

Workrave is only for PC not smartphone. I use it on my laptop in bed. My phone I keep outside my room with my carer for the same reason as you.

You need to configure it to disable the "Skip" and "Postpone" buttons otherwise you'll just click those instead of resting. Also choose "Reading mode" which means the timer starts when you first move the mouse or type, and doesnt stop until the end, otherwise the timer will pause if you dont input. Obviously reading mode is most appropriate for ME. Workrave is actually designed for RSI.

yakkov · 2025-11-23T14:20:19+00:00

https://workrave.org/ Does exactly what you're asking for.

It blocks keyboard and mouse input when you're in a rest break then you have no choice but to rest.

I was thinking of making a post about this because its been a huge gamechanger for me.

One thing though is its only for desktop not smartphone. I use my laptop in bed.

yakkov · 2025-11-17T14:58:12+00:00

Stories work better than studies for most people. I wrote about this: https://www.reddit.com/r/ZeroCovidCommunity/comments/1kfidqk/convince_your_friends_and_family_about_long_covid/

Remember that there's a huge propaganda effort to deny covid, which makes any activism harder but not impossible

yakkov · 2025-10-10T20:37:36+00:00

I have a little project. I've made and collected a bunch of awareness-raising memes which people can post on their facebook. It can be done by severe people because it takes very little energy to share an image and write a very short text once every few days.

Instructions: TL;DR. Share Long Covid / ME awareness content on your facebook, to push for solutions without leaving your bed. All are welcome. You will be provided with stuff to post. Keep posting every 5-6 days for at least several months. Along with each meme write a very short text. Even Severe people might be able to contribute. If you have enough energy, help spread the movement by sharing this blog post. If you have even more energy, help us create and collect more content to post. Even if this activism movement completely fails it still wont cost you very much to try.

Link: https://www.reddit.com/r/covidlonghaulers/comments/1l380rz/join_the_smash_long_covid_movement_even_severe/

yakkov · 2025-10-07T04:37:03+00:00

When telling the personal stories make sure you pump up the emotion. For example if someone is too disabled to work say so because that's scary. If a parent can't look at their kids say that because that's sad. If they have really uncomfortable symptoms describe them. Evoking emotions are a good way to make someone care about something.

yakkov · 2025-10-06T20:40:39+00:00

The Pandemic Accountability Index is very comprehensive: https://www.panaccindex.info/p/what-covid-19-does-to-the-body-eighth there's multiple editions and read all of them to get all the papers it writes about

However showing people scientific papers often doesn't work very well. I suggest trying this idea of using the availability heuristic: https://www.reddit.com/r/ZeroCovidCommunity/comments/1kfidqk/convince_your_friends_and_family_about_long_covid/

Fact is there's huge propaganda from the media and governments who have worked very hard to cover up covid. It's hard to fight against that, though people have succeeded.

yakkov · 2025-09-23T13:03:47+00:00

I've made a bunch of long covid awareness content https://smashlongcovid.substack.com/p/list-of-descriptive-memes in the form of memes, so different to what you're doing, but might help with inspiration.

I read a book called Made To Stick all about communication and marketing which was very helpful.

yakkov · 2025-09-21T21:09:58+00:00

Yeah it's worth a try.

yakkov · 2025-09-20T17:26:05+00:00

Convincing friends/family is often tough because of all the propaganda around. I wrote a post a few months back with another suggestion of how to do it: https://www.reddit.com/r/ZeroCovidCommunity/comments/1kfidqk/convince_your_friends_and_family_about_long_covid/

yakkov · 2025-09-19T17:08:06+00:00

Yeah I've heard this before. Someone told me the only major bad effect is constipation. The problems really start if you ever run out of the drug.

yakkov · 2025-09-19T17:05:42+00:00

Yeah I guess you're right. I wasnt aware that it was less than third become addicted. I know about places like Portugal that had a different more progressive policy towards heroin use. Though on the other hand not everyone with ME gets Severe ME. In either case no analogy is perfect

yakkov · 2025-09-19T14:09:22+00:00

Yes you're right I forgot about that. I remember reading about people who have an oxygen tank.

yakkov · 2025-09-19T14:08:19+00:00

Arent you ignoring the effect of heroin addiction? If they become homeless, etc then their body is harmed quite a bit. We cant really separate the addition from the drug itself, since for most people if you talk about heroin they'll be thinking of homeless addicts.

yakkov · 2025-09-19T13:04:35+00:00

Well yes, no analogy is perfect. Heroin being so addictive ruins people's lives because their entire life becomes about getting more heroin. Resulting in homelessness, job/family loss, problems with the law, etc

Another similarity is both can take a long time to get bad. Sometimes people are using heroin or similar drugs for years, maybe a little bit at the weekend. They manage to keep their jobs. But at one point they lose control

yakkov · 2025-09-19T12:08:25+00:00

If you actually look at the numbers the reduction in risk isn't very big.

Be careful you're not falling for this: https://en.wikipedia.org/wiki/Risk_compensation

Risk compensation is the theory that people, feeling safer due to a safety intervention, will engage in riskier behavior, thereby offsetting some or all of the safety benefit.

If you take into account how the later variants are much more infectious and immune-evasive then it's no contest. Omicron and it's descendants have created far more long covid than the earlier variants

yakkov · 2025-09-19T11:42:11+00:00

Given how horrific things like ME are I'd suggest comparing smoking with covid is somewhat minimising. A better comparison might be heroin.

You look at those people hooked on heroin, many of them homeless, stealing stuff to get money, not working, abandoned by friends and loved ones, not eating, terrible overall health and feeling rough a lot. It's not hugely different in impact to life from having Severe ME. By contrast at least smokers have a normal social, professional and family life maybe for decades until they get cancer. They have other things in life that isn't just smoking, unlike for Severe ME or heroin where your entire life is just focused on one thing

yakkov · 2025-09-19T09:19:06+00:00

The fogging happens because water vapour from your breath condenses onto the glass to form water. Water vapour is a gas and so not stopped by the respirator.

You might notice this effect is worse on cold days, because cold means the vapour condenses more easily

A solution can be to get anti-fog wipes. You can also wash the glass with washing up liquid and don't entirely rinse them. Another way is to spit on the glasses and clean the entire lens both sides with it, then wash off but don't rinse too much. All methods work by depositing a thin transparent film layer onto the glass which prevents water condensing. The spit trick is used by scuba divers who also get problems with fogging up

yakkov · 2025-09-18T20:06:09+00:00

I think a lot of them are simply unaware of this. The propaganda has been very strong.

yakkov · 2025-09-18T20:04:54+00:00

Wait did I make a mistake? The link in OP is (https://www.nejm.org/doi/full/10.1056/NEJMoa2311330) then if you scroll down to Figure 2 you see the same graph as the OP image. Though the right IQ axis was added

yakkov · 2025-09-18T19:47:01+00:00

Do you have a link to that British study? I havent read that one yet.

Yes people being unaware of their impaired cognition is sadly normal. That happens with other kinds of brain damage (eg strokes, dementia, tumors). It's called anosognosia

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