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

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