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

Andy

Andy

Retired committee member
Greg Owen wanted a new drug, not available through the NHS, that would stop him becoming HIV-positive. But it was too late - he already had the virus. Despite this, he and a friend worked on an ambitious plan to help thousands of others get the new treatment.

"You know when you do one thing… when your whole life changes? Pressing that send on Facebook was actually the moment my whole life changed."

Greg Owen grew up in Belfast, the eldest of six children. It was the 1980s, the height of the Troubles, and he was, as he puts it, "very gay".
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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.
He decided to reveal this big secret to the world. So, he posted on Facebook that he was HIV positive. And he talked about Prep - this drug few knew much about, which could have stopped him getting HIV.

His phone "just lit up", he says.

"First of all, people couldn't believe I'd done that. And then there was, 'What is all this Prep stuff?' Why would Prep have kept you HIV negative?' So, I could tell people what Prep was and I could tell people how it worked. And then obviously the next question was, 'How do I get Prep?'"

And that was Greg and Alex's next move.

"We don't even need the government right now," Alex recalls them saying. "We can do it ourselves. We'll tell everyone to order pharmaceutical drugs on the internet and start taking them."

From Alex's bedroom, they started building a website.

First, came all the medical information people needed to know. And then, the bit everyone wanted - the opportunity to "click to buy". "We didn't want to make any money ourselves. We were just linking up buyers to sellers," Greg says.

It was a simple, radical idea.

"I'm not going to wait for the NHS to come and save me," Alex recalls. "I want Prep now and this is how I'm going to get it."

So, they called the website I Want Prep Now. It launched in October 2015.

They got 400 hits in the first 24 hours and it mushroomed from there.
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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.
 
Andy said:
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.
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In the UK, given the reach of AfME and the MEA as the main ME organisations whose purpose is to help patients, it might be more effective if we could persuade them to improve the accessibility and accuracy of their basic information for newly diagnosed pwME.

AfME suffers from unscientific inaccuracy and sitting on the fence with their unevidenced 'some people find... helpful' type of statements.

And the MEA has a plethora of leaflets and the purple book, all of which cost money, and a website I find pretty difficult to navigate.

MEAction is probably the nearest to what you are looking for. This page:
https://www.meaction.net/about/what-is-me/
is probably the best I've seen, both succinct and not offering false promise, and with links to useful resources.
For the USA, this statement about treatment seems like all that can be said at the moment:
Treatment
There is no FDA approved treatment for ME. Because many ME patients’ symptoms vary over time, specialists often suggest treatments that are highly personalized and change treatment protocols frequently.
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For the UK and a lot of other countries there would have to be a warning about ineffective and harmful CBT/GET.
 
Andy said:
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.
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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.
 
Andy said:
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.
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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
Screen Shot 2018-07-08 at 11.04.55.png

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.
 
Interesting thought, @Andy. I don't know how web searches work. If we called a site Chronic Fatigue Syndrome Treatment would that automatically put it near the top in a search, or does it have to have a lot of traffic first?
Or if we had a public thread on here with that title, would that be found on searches?
Edit - or an article with that title on a free blogging site like Medium, or a blog with that title?
 
adambeyoncelowe said:
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.
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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.
 
Trish said:
Interesting thought, @Andy. I don't know how web searches work. If we called a site Chronic Fatigue Syndrome Treatment would that automatically put it near the top in a search, or does it have to have a lot of traffic first?
Or if we had a public thread on here with that title, would that be found on searches?
Edit - or an article with that title on a free blogging site like Medium, or a blog with that title?
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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.
 
yes Search Engine Optimisation is a challenge when you are up against NHS which will inevitably come at the top You can pay to come at the top of the page but I have no idea what sort of money involved - no doubt a waste of resources. The design of a home page and where information sits on it is one people tend to get caught up in but in reality most people wont use the home page until the website becomes a regular source of information for them. People are going to get through direct to information through search engines.

I think both MEA and AFME websites are pretty old fashioned and cluttered in design which actually detracts from the content in terms of useability. ME action is more up to date but the content is sometimes a bit too technical for an "average person"

AFME is wishy washy and doesnt give unequivocal messages, although the recent edits are better than what was there before. MEA at least has a stronger message about CBT/GET. The purple book is great for its intended audience of medical folk and informed patients but not what a newly diagnosed person wants as their first information about ME. The leaflets have to be downloaded and are a source of revenue so there's a barrier to accessing infomation there. AFME has too much reliance on PDF content as well which isnt user friendly as a section in a PDF document wouldnt surface in a web search.

People on this forum probably arent the best audience to design and comment on a website aimed at people who are newly diagnosed as there is too much background knowledge and looking for details, an informed specialist audience rather than general public. What would be needed is something in clear language aimed at a general public audience to compete with the NHS web content on CFS/ME but which doesnt have the BPS angle.

of course the ideal solution would simply be to have NHS content that was fit for purpose.............
 
Andy said:
As to directing patients to it. Well, I would guess patients will Google for more information, and if I Google "chronic fatigue syndrome treatment"
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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.
 
Andy said:
While there are many, many other sites that offer this information, I suspect that as simple a site as possible could be very useful.
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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.
 
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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?
 
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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.
 
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