Do we need a simple ME info website? Thought inspired by an article on a HIV drug.

https://www.bbc.co.uk/news/stories-44606711

So the story was of some interest in that it talks about getting the NHS to take on the job of supplying a new drug.

The main idea that I though was of interest is where they set up a website designed to educate people about the drug in question and it's availability.

So my thought is "would a website solely dedicated to giving basic, as accurate as possible, information on ME be of value"? Especially if we talk about treatment options (or lack thereof).

While there are many, many other sites that offer this information, I suspect that as simple a site as possible could be very useful.

 

I used this website back when it launched. That they test the pharmacies for quality and reliability was a major plus at the time.

Something like this could work for ME patients, but first we'd need a drug that worked like PrEP does.

If you take PrEP daily, it's supposed to be as much as 99% effective at preventing HIV. Given that the risk of catching HIV is pretty low from any one exposure anyway, you're looking at a 0.0143% to 0.37% chance of catching HIV from any one exposure. (Note that exposure means coming into contact with HIV, not unprotected sex in general, as most people still don't have HIV. And if both parties are on PrEP, you're very safe indeed.)

PrEP is pretty much a magic bullet for HIV, and has been tested on hundreds of thousands of people worldwide. We just aren't anywhere near that for ME.

ETA: Now a #stopGET website would be great. But how would we direct patients to it? PrEP is popular because it's something you can flag up on Grindr or other dating/hook-up apps. It's also something talked about in clubs. PwME don't really have the same contact with each other until after they're already ill, and by then, they've usually already experienced the clinics and the worst the NHS has to offer. A better idea would be, as Trish suggests, getting AfME and Wikipedia updated, since they're high in the Google searches new patients will see.

 

Yeah, not bad, though definitely needs the edit that you suggest. However I'm thinking of a website that has that information on it's home (and possibly only) page, instead of being tucked away like this one is and always seems to be.

 

There's a big 'WHAT IS ME?' button on the homepage that links to this article, so it's not tucked away. That's probably as clear as it's going to get without a landing page dedicated to just one thing.

 

@adambeyoncelowe - to be clear, I'm not suggesting that we have a drug to offer patients at the moment, but we can offer them clear, accurate, easily accessible information, including on treatment.

As to directing patients to it. Well, I would guess patients will Google for more information, and if I Google "chronic fatigue syndrome treatment" I get


Obviously numerous variations of terms can be used but there doesn't seem to be anything there that means that it wouldn't appear on the first page of that search within a relatively short time.

 

In my opinion it could be more clearly highlighted, would benefit from being put into the menu top left on that page and probably could do with being "What is ME/Chronic Fatigue Syndrome" but the MEAction website (as are all the other websites mentioned so far) is there to be many things, so in the context of comparison to a website solely dedicated to providing basic information on ME, I'm not being down on them by saying that.

 

I'm absolutely not an expert in anyway but I believe Google likes to keep exact details on how it ranks websites secret, to avoid people gaming the system. I think it's an amalgamation of website address, keywords in the content on the site, how many sites links to the site from elsewhere and amount of traffic, amongst many things. I think it's quite possible that a public thread here could appear quite high. Maybe take the public thread and post it on blog sites.

 

It's an idea. It would need good SEO and high reliability. That means you'd want other websites to link to it. Getting a Wikipedia link to your page is one way to do it, but I think that would be nearly impossible, since it's being squatted by idiots.

The other thing to do is get charities to link to it, and then hopefully news sources as well.

It's quite hard to make the first page for a topic with lots of competition. Adverts always trump news, too, since they're paid to intrude upon whatever appears there organically.

 

The problem with relying on a Google search is that Google collects what you previously searched for and adjusts what it shows you in the results. It also publicly says that it changes the order of results for political/monetary reasons. Because of this, you cannot rely on results being the same for each person.

I think they rely on links from higher ranked pages to the site, to stop gaming of the search results. It's extremely biased towards the status quo. This is why a PR/marketing company will pay for content to be included on wikipedia, and for other content to disappear.

 

I think this is not a bad idea.

Although I think of myself as informed about ME, I always find I have trouble with finding good references when I need them. I could imagine such a website could address this, too.

I like the layout of this site:
https://infrontscience-mecfs.wixsite.com/about
It looks very professional.

What would be absolutely fantastic is if we could get scientists/doctors to write parts of the website.

Do you have something else in mind @Andy?

It should be noted though that the idea of Greg and Alex were more than just supplying information.

After reading, again, some disgusting stuff that is circulating in official circles in Germany, I really feel an urgent need to counter that. There is also Denmark and the Netherlands who have ongoing problems with BPSers. I can imagine Spain, Italy and France (and all the others) don't have a better time. I sometimes feel it could be highly advantageous if we all combined. Maybe such a website could be it. Or a website by MEAction...or whatever.

 

Wix is really easy to use when it comes to designing a website. I actually started making an I Want PrEP Now kind of website a while back using it: http://respectforme.com. I need to update it, though, as I wrote it long before here I came here, so there were gaps in my knowledge.

The mobile version needs sorting too! It's desktop only, really.

 

I think its a good idea, the existing organizations are not up to the task and turning them would be like trying to steer the Titanic with a canoe paddle...
Who wants to take on building the website?

 

I agree our biggest win is to insist that the nice guidelines prompt the NHS to update their information on all their web pages with clear warnings not to exercise or push through if you think you have it.

When I was diagnosed that was where I went first regardless of google rankings.

The process of getting a diagnosis itself meant that I was on the NHS web pages all the time working out what I was being tested for next.

 

The NHS seems authoritative if you don't know the issues with NICE. So updating that website would be really helpful, as would Wikipedia, but again, I think that's why ME-pedia was set up: because those websites are so poor.