Google Trends not showing increased awareness for CFS/ME

[nerd]

I created this plot to analyze if COVID-19 somehow contributed to an increased awareness for CFS/ME.

The latest Google Trends data show increased searches for Long COVID in Google and YouTube - multitudes greater than for CFS/ME. There is no increased awareness for CFS/ME from Long-COVID searches since there is no upwards trend in the overall CFS data.

The news reporting also reflects a proportional increase in interest for Long COVID in relation to CFS/ME which remains an untouched topic. There is a clear disproportion between the public interest (indicated by searches) for Long COVID and the news reporting on the subject.

A bias in news reporting becomes visible when the COVID-19 medication candidates Remdesivir and Ivermectin are taken into account. Ivermectin is a repurposed drug with barely any lobby. Its use for COVID-19 is scientifically proven. Remdesivir has a great pharma lobby. Its use for COVID-19 is unproven. Among all subjects, Remdesivir received the greatest attention from online news agencies. Compared to these drugs, there is barely any reporting on the Long COVID subject, not to mention CFS/ME. Even in the last months, Remdesivir has received more attention.

By "news reporting" I not only mean how often the press writes about it, but also how Google's, Facebook's, Twitter's, and other algorithms rank the articles. These internet companies also have their share in the opinion-forming process.

 

[Judee]

The latest Google Trends data show increased searches for Long COVID in Google and YouTube - multitudes greater than for CFS/ME. There is no increased awareness for CFS/ME from Long-COVID searches since there is no upwards trend in the overall CFS data.

The pessimist in me kinda had a feeling this would happen.

Thanks for all your hard work.

 

[Rufous McKinney]

Ivermectin are taken into account. Ivermectin is a repurposed drug with barely any lobby.

Ivermectin may have been tar babied with the Conspriracy theory label. We now see all that backfiring regarding origins of COVID virus theories. Facebook banning: discussion of Wuhan research lab.

I hope all this labeliing topics such that they become Undiscussable: how is that going to work out?

 

[seamyb]

You have to wait for the long covid crowd to come out of denial. Even mention CFS on the long covid subreddit and you get all this outcry about how upsetting it is to label people who have PEM, chronic fatigue and pain from a virus as having CFS. It's understandable of course. I went through it myself, being a presumed covid long hauler.

Know what helped me accept it? Phoenix Rising. So, thanks.

 

[Pyrrhus]

This is a great graphic!!! Thanks @nerd .

How did you measure the searches for ME/cfs? There are so many variations to consider: "CFS", "ME/CFS", "CFS/ME", "chronic fatigue", "myalgic encephalitis", "myalgic encephalomyelitis", etc.

This is the first hard data I have seen that tries to answer the question: "Is Long COVID widely raising awareness for ME/cfs?"

We have seen many many anecdotes from doctors and other people that Long COVID has opened their eyes to the situation with ME/cfs. But that doesn't mean that the message is getting out to the public at large. (which may just take time)

Remdesivir has a great pharma lobby. Its use for COVID-19 is unproven. Among all subjects, Remdesivir received the greatest attention from online news agencies.

It is important to note that the initial interest in Remdesivir came from multiple investigators who found that Remdesivir had very strong activity against Sars-Cov-2 in vitro.

Unfortunately, the in vitro results did not lead to any promising in vivo results.

This is actually a very common scenario in the field of antiviral drug research.

In the 1990s there was a lot of pessimism because there were many drugs that showed strong in vitro activity against HIV, but which failed in vivo.

Then, in 1996, someone had the idea to combine three of these disappointing drugs together and voila! The combination worked great in vivo! This simple idea changed treatment of HIV forever.

So, don't count out Remdesivir just yet. It may come back as part of a combination treatment...

 

[Boba]

Same here. Long Hauler who denied having cfs at the beginning. I think that things will straighten out after a certain period of time. Problem will probably be that you miss the momentum. However the awareness will rise for sure. Covid will stay a problem with all the variants coming up. Furthermore the next pandemic with another virus could come anytime. Ergo post viral symptoms will have to be acknowledged. The children of important politicians could be next.
I got covid at the premiere of a short film I produced that was nominated for a student academy award. I‘m considering making another documentary connected to PASC and ME. I have a pretty good network here in Germany. The most famous actor here is a friend of mine bla bla. It’s not about bragging here., but about mechanisms one has to trigger to raise awareness. As soon as I have a bit more energy I will start to set things up for that. It is absolutely necessary and effected my life so heavyily. I just have to do sth about it.

 

[hapl808]

Meh. Documentaries and news stories make people go, "Wow!" And then go on ignoring it and getting on with their own lives.

You need a high critical mass for any real change. I mean, 50k people die every year in the USA from the flu and no one particularly cares. So for those of us in this situation for decades, we've seen the, "They can't ignore it now!" many times before. I ignored it myself - why label myself with a disease when there's no definitive diagnosis or treatment? Unfortunately I really tried to 'mind over matter' and that led me to a significant series of crashes to where I eventually couldn't ignore it and manage my symptoms any more.

As I've said elsewhere, there will be a great trumpeting of compassion and care while funding sources are significant. As CFS and Long Covid blend together and people who were never diagnosed with Covid insist they have Long Covid, eventually there will be papers about psychosomatic or neurosomatic or whatever label seems the least derogatory.

Obviously I hope I'm wrong about all of the above, but even I couldn't understand severe CFS when I had mild or even moderate CFS. I thought the severe people were allowing their moderate CFS to take over their lives. I just pushed through. Oops.

 

[Rufous McKinney]

The most famous actor here is a friend of mine bla bla. It’s not about bragging here., but about mechanisms one has to trigger to raise awareness.

That sounds wonderful! go for it! And I hope we can get it dubbed into English

 

[Boba]

I have to disagree with the news stories and docs point. Whatever attention you can get is important. Surely people move quiet quickly to the next topic. However if you address things right and push a topic into a certain direction you will have an effect. E.g. „unrest“ helped a lot concerning attention. I think Jen Brea did a great job. Documentaries would be pointless if we go by the logic that the „wow“ doesn’t count.
In my opinion it is important to position the content commercially right and use the publicity of e.g. an famous executive producer to give it more traction and attention in the media. The person I‘m thinking about in my case received an honorouble award for integration by chancellor merkel. The story has to be right. I don’t know if it will work out, but I will try. And when I say I will try I mean it and work my ass (or what’s left of it) to get it done. Maybe that‘s a reason why I ended up with ME, but it has to be good for sth in the end.

 

[Rufous McKinney]

Unfortunately I really tried to 'mind over matter' and that led me to a significant series of crashes to where I eventually couldn't ignore it and manage my symptoms any more.

I spent at least 4 years consistently working towards the notion that this is some illusion. It was tied to a simple meditative concept: do not seek the cause of your misfortune.

I was taking things to help it, to feel better. But not buying into it, and assuming that there was a way to- send this on its merry way- Pick on Somebody Else- Banish, etc. The body knows how to be well- somehow it knows- its just confused.

I really placeboed myself at one stage- that I would feel better when I move down to where my daughter lives. Because I did pretty well on this one month visit. But actually: its just I got worse ME, AFTER the one month visit.

So when I went back for a 3 month visit- I expected the warm weather, fresh air, low EMF, low mold, being with my beloved family members- that I would feel better there. Instead: I got SO Much worse and flunked pacing even tho I hardly did anything. ( I was forever not going with, not joining the team, not on the field trip).

It was very disappointing. Poignant, yada yada.

why label myself with a disease when there's no definitive diagnosis or treatment?

I would expect that when most people who find themselves with long haul sequelae from COVID, they may then discover that ME/CFS exists, but what they are reminded immediately in virtually EVERY discussion- is that we don't receive meaningful treatment, and the comments about psychosomatic.

Who in their right mind would volunteer to join our club?

 

[Diwi9]

If an illness is constantly rebranded, there is no continuity in society's knowledge of it. When I first saw news reports on Long Covid, the reporter would claim, "A new mystery illness, one which doctors have never seen..."

Pick the decade and geography of when you were diagnosed and that will determine the name of your "CFS." I find the clinical diagnostic criteria a bit of a joke because people simmer the illness down to those criteria missing so many weird, yet widely experienced, symptoms. If doctors were trained that these myriad of symptoms are quite normal in the illness, everyone would stop being baffled by "...a new illness that no-one has ever seen before."

 

[Rufous McKinney]

the reporter would claim, "A new mystery illness, one which doctors have never seen..."

A fundamentally ignorant statement thats wrong.

 

[nerd]

How did you measure the searches for ME/cfs? There are so many variations to consider: "CFS", "ME/CFS", "CFS/ME", "chronic fatigue", "myalgic encephalitis", "myalgic encephalomyelitis", etc.

Google has categorical graphs for all of the search terms, except for Post COVID. So I checked different terms such as long hauler, Long COVID, etc. and Long COVID was the only one sticking out. It might still be underreported a little bit, but this would only make the disproportion worse.

So, don't count out Remdesivir just yet. It may come back as part of a combination treatment...

This leads us to the next misconception in mainstream media and medical leadership.

1. COVID-19 is not a viral disease. It's a post-viral disease. You can't treat a post-viral serotonin-mediated inflammatory disease with antivirals. There is no need for trials that supposedly show that Remdesivir and HCQ don't work for incubated patients when it's not even supposed to work for them. Serotonin antagonists and immune-modulating treatments are supposed to work in the hospital.
2. Medical leadership completely disregards the consideration of early treatment. But antivirals only work during early treatment, except when they are also immune-modulating like Ivermectin is.

 

[nerd]

The pessimist in me kinda had a feeling this would happen.

There is still hope, as @seamyb says. Give the long haulers some time to come out of denial. They already seem to be organized, unlike CFS/ME patients for decades. Maybe it can become a movement.

Even mention CFS on the long covid subreddit and you get all this outcry about how upsetting it is to label people who have PEM, chronic fatigue and pain from a virus as having CFS.

I hope you can still convince a few. Messages like these can spread exponentially when they aren't blocked/censored by the major networks.

I got covid at the premiere of a short film I produced that was nominated for a student academy award. I‘m considering making another documentary connected to PASC and ME.

I've been wondering how the future in maybe 10 years will look back at this time. Will they be aware of all the corruption and profiting from the pandemic, the potential lab origins, that Ivermectin and Fluvoxamine could have saved so many lives, the failing of medical leadership, the disinformation campaigns from pharma companies, the censoring of topics like these on Twitter and Facebook, from Google's search algorithms, the press which lost their methodology of critical thinking.

Maybe a documentary can shed light on this, but maybe it will be treated just like the other topics and never get any attention. Take Michael Capuzzo as an example. He's a prominent journalist and author, it doesn't bother medical leadership or major news agencies when he wrote about Ivermectin. Nobody listens.

But who are we to judge if we don't try our best?

 

[junkcrap50]

I understand Long Covid people being in denial and not wanting CFS, a disease where there's no cure and you're permenantly stuck as unfixable. But at least ending up having CFS you start with 20-30 years of CFS research. You're not starting from scratch on a new, unknown pathology.

So they continue to think that if it's not CFS, there is still hope that an intervention can be tried and possible fix/help you. If you have CFS, they might think they might as well just accept it, live life best you can as is, and abandon the money and time spent on trying to fix your CFS because it won't happen. I've had the same thought process.