ME Analysis - Patient created Web document relating to the PACE study

[alex3619]

A collaborative network of ME patients with backgrounds in science/mathematics has worked over the past year to produce a website using the actual data from the PACE trial to analyze the results. As you know, they are not impressive.

Our website, "ME Analysis: Evaluating the results of the PACE study", makes innovative use of graphics and animations to present its 10 conclusions in an easily accessible format. The structure of the report enables the reader to view the conclusions in a summarised view, or to look at the more complex analysis leading to these conclusions.

"ME Analysis" also includes the results of an informal study of the natural fluctuations in the health of 123 people with ME, using one of the PACE trial's core assessments. The findings indicate that such fluctuations may be a significant factor.

You will find the project at:
evaluatingpace.phoenixrising.me/homepageanim.html ;
but if you have any technical issues, use a screen reader, or have a slow internet connection, try entering the website through:
evaluatingpace.phoenixrising.me/home.html .

Please help to pass this message on.

This is the same notice as appeared on Co-Cure by Janelle. I couldn't see it posted anywhere else so I posted it here. Bye, Alex

 

[Enid]

That's great alex - thanks to you scientists and mathematicians.

 

[alex3619]

Hi Enid, the primary instigator was Graham so far as I am aware, he deserves much of the credit. Janelle put in a huge effort too. There were quite a few of us who supplied material here or there or assisted in various ways. Graham knows more about that than I do. Credits are found on the conclusions page toward the bottom. Bye, Alex

 

[Valentijn]

I loved the animation - a great way to illustrate how bad the PACE study was

 

[Esther12]

Thanks to all those who put so much work in (especially Graham). It looks like a good antidote to those who try to claim that CFS patients were only opposed to PACE out of some fear of psychiatry, or something like that.

 

[oceanblue]

A truly awesome enterprise that did so many things right - not least taking on an enormous project and sticking with it through to fruition. Then there's the brilliance of the ideas within; lot's of Graham's quirky but effective way of making complex things simple (what a loss he was to teaching). And the animations, again using brilliant metaphors like the CBT/GET Olympic race, are showstopping. This should win awards.

One final purr from me: the nested structure is inspired so that a single page of conclusions can be explored in more and more detail as you wish, or just stick with the simple summary. Superlative.

I've looked, but there is no smiley to do it justice.

 

[adreno]

Awesome work!

 

[heapsreal]

Excellent!!

 

[Chris]

Great job, you guys--many thanks! I particularly liked the avoidance of shrill rhetoric--makes it much more likely that this will have a widespread effect. Great stuff! (and that animation is inspired!) Chris

 

[OverTheHills]

Congratulations to everyone involved in this project. Its so nice to have some cheering news. I wish there was something we could do to recognise the team (anyone got an oscar statue?)

I am very keen to know how we can help to get this publicised as widely as possible: a print publication, press releases (bbc and newspapers), wider circulation to ME organisations from the big charities down to local support groups. I could forward to our national patient organisation for NZ (ANZMES) if that is OK?

OTH

 

[SOC]

Just got to run the animation today. This is brilliant!

 

[Graham]

Thanks everyone: it really was a team effort. I was just the nagging slave-driver that kept pushing everyone to answer questions or produce stuff. After 40 years of teaching maths, I do know how to nag! The animations are mostly down to my son, who also has ME. The fact that you can actually read it is down to Janelle and Mark, and if you want to know who contributed to the fierce analysis, just look through the 79 pages of the PACE thread. Many people have directly or indirectly given ideas to us: the difficulty was honing it all down and getting the package right.

I haven't ever produced anything like this, so I really don't know how to go about getting it noticed. So far I have sent emails to everyone I know connected with ME (which includes all the main charities and organizations in the UK), and Janelle has done the same in the USA. We have also sent it out to various sympathetic journalists, the Countess of Mar, and a variety of other people. I'm thinking more of a slow burn, and trying different tactics according to who we contact. So with the Countess I have pointed out the need for specialists so that people can be sure that they actually have ME. With Private Eye, I have drawn their attention to the unhealthy influence of the insurance industry, who need ME to be seen as psychological. I am still doing rewrites of a letter to the Lancet.

I have created a campaign page which is not part of the navigation system and only there for members of PR. On it I will post up lists of the people that we have contacted, whether we have received any replies, updates on what might be happening, and suggestions. It would be great if you felt you could take part in this, see where the holes are, and let me know. Even better if you could spread the word. I will post up a link in a new thread soon.

You may notice from my hairstyle that youth is not on my side. But, and this is a big one for me, I have decided that I must set up a Facebook page for it as well. Another steep learning curve for me. We are also chewing over a couple of ideas for Youtube videos. But all of that will take time, so, as I said, a slow burn. So whatever help you can give in spreading the word, the better.

I think we are getting, on average, 368 pages viewed per day at the moment. That's a great start – but I want world domination. Frank Twist has kindly translated some of it into Dutch for us to spread the word further, and his associate Michael Maes was very complimentary. "Over the Hills", if you could get NZ into the picture, that would be great.

So now I am going off to edit the campaign page, ready for all of you to log in and come up with more ideas (preferably ones that do not involve Janelle and me doing all the work!).

Thanks for your kind words. It is time that any psychological interpretation of ME was dumped for good. Please also feel free to be critical of anything. We need to get this right, and no-one, especially a tired old maths teacher, can avoid making mistakes.

 

[Vitalic]

Simply amazing, this thing really needs to go viral.

 

[Don Quichotte]

This is an impressive project. Even too impressive.

Now, the question is who is going to be your audience. Because if you know who your target audience is, you will know how to prepare it in a way that- A. will not raise antagonism. B. will get them to understand. C. will (hopefully) get them on your side.

Think of your worst opponents and think how you are going to get to them.

Love your enemies because they bring out the best in you. Friedrich Nietzsche

Because, being the devil's advocate, I can see how people (who do not understand this illness) are going to ask- well, if they can produce something like that, why can't they do it on a regular basis...
There are very good ways to deal with those kind of questions, but I think you have to be prepared for them.
(The first time my accomplishments were used against me like that, I was quite devastated, but with time I learned. Although, it is still one of the hardest things to deal with, for me).

I haven't ever produced anything like this, so I really don't know how to go about getting it noticed

The best to learn from are drug companies. They are just amazing in marketing.

I also think that for the above reasons you need to make a very short summary that can be viewed in seconds and convey the message. I would personally take off the "phoenix rising" logo, just like drug companies don't put their logo on the studies they sponsor. Drug companies are experts in creating such pamphlets which they distribute to every physician on earth. Physicians are busy people and don't have time to read lengthy documents which are not in their direct field of expertise. The rocking chart in the corner (which is really cute) creates a feeling of pleasant leisure. This is definitely not the impression you want to create. Also, the animations should preferably be seen by a common program and not something you have to download.

Also, physicians want to help patients, but they also don't want to cause any harm, so if they have something which is possibly effective, but can't cause harm (and they don't have anything better to offer) they will gladly go with it. Many of them have seen the paper in Lancet (most probably only read the abstract) and it clearly conveyed the message that it may or may not help your patient, but will definitely cause no harm. I doubt many (including the reviewers?) went to look at the supplementary material or asked themselves what is the difference between adverse response and adverse event and what is the meaning of such a large number of adverse events in a supposedly healthy population of young people and why were the serious adverse events of the treatment group clustered with those of the non-treatment group.

The main point of the PACE trial was- this causes no harm and may even be effective in some patients.
Most people (including physicians) don't take CBT very seriously. They tend to think-what harm can " talk therapy" do. Because they don't take it seriously, they are ready to use it without putting much thought into it.
Physical exercise is seen as the ultimate remedy for everything, so it can only be beneficial.
Very few physicians, for instance, are aware of the fact that acupuncture can be fatal.

The point you have to stress, is that it can cause harm.
GET is not harmless, and CBT is not harmless either. Use clear animations to show this. (just like you did with the 6 min. walk test). Look at the adverse responses, but also at the adverse events in the supplementary material. Compare it to adverse events of medications. Stress the fact that CBT and GET are serious medical interventions.

Your goal is not to convince everyone, but to create a discussion. Turn this into a controversial issue and get as many people as possible involved. (See for instance the debate regarding antidepressants).
If you can get a good medical journal to publish a " for" and " against" this will be a good step in the right direction.

Please don't see this as criticism of your work. On the contrary. I think it is excellent and it would be a shame if it doesn't create the proper impact.
Those are just some minor suggestions which I hope can help.
I would even consider trying to get a PR company involved.

 

[alex3619]

Because, being the devil's advocate, I can see how people (who do not understand this illness) are going to ask- well, if they can produce something like that, why can't they do it on a regular basis...

Your goal is not to convince everyone, but to create a discussion. Turn this into a controversial issue and get as many people as possible involved. (See for instance the debate regarding antidepressants).
If you can get a good medical journal to publish a " for" and " against" this will be a good step in the right direction.

Hi Don Quichotte, I will reply to these two points. The first one has a simple answer: we took a bunch of people with individual areas of expertise, they did things in their area, and it took a year - for a moderate length document. This was slow going. Having said that it show we can produce things, just slowly and with a level of attention to care that most people do not need.

The second point is I think an important one. This is already a contraversial issue, but few are aware of the details. Bringing the controversy to the level of open debate has to be one of our main goals.

With respect to my book, I estimate I operating at considerably less than 10% of what I could do if I were healthy, and a lot of other things are put on hold for me to do that - today I ate crackers instead of real food because I don't have the energy to cook, though part of that is other issues. Add to that the issue that it will take me probably twice as much work due to having to cope with brain fog and memory issues, so we are talking maybe 5% efficiency. What employer would hire someone operating at 5%? The take-home lesson though is that 5% is not zero. We can do things given enough time, resources, cooperation and interest.

Writing a book, for me, is a 3-10 year project and I am hoping to do it in 5 years. If I were healthy I could do it in one year - maybe. Its also possible that my timeline is too optimistic. I keep writing blogs on issues relating to my book because I want them out there now, and the book is too far off - and its also practice so I can refine my writing methodology. That is why I have said I may well finish after we have a cure.

My message to other patients is: if you can read, if you can make notes, if you have interest, and have time, and have any inclinition to write, you can produce articles on topics of interest. Just don't try to engage things which are not important to you, that would make it too hard.

Bye, Alex

 

[oceanblue]

The Youtube idea is brilliant, Graham, think you should go for that next . Once it's on youtube it's easy to spread and easy to paste onto forums like this one. It's also short and awesome so the main animation has the potential to go big - and will fit perfectly with facebook too (or maybe you can post videos directly using just facebook, I've no idea).

 

[ukxmrv]

This is really is good and thank you so much to everyone involved!

 

[Enid]

Love the idea of "flooding" the airwaves - there is far too much publicity by the CBT/GETists, and psychobabblers around.

 

[Graham]

Thanks all for your support – it's the best "prize" our team could get. Much better than an Oscar.

Thanks, Don Q, for your suggestions: never worry that I will fret over suggestions or criticisms. I'm not arrogant enough to believe I know it all (although I will admit to being stubborn and a bit of an idiot!), and I know we are on the same side. I'd much rather have usefully critical comments from friends than be caught out later by opponents. I'll work through them today (as Alex says, very slowly). Certainly I need to bring the "harm" aspect more to the front, especially in my half-written letter to The Lancet.

Our target audience is those in the middle, those who still think that ME/CFS is largely psychological but only through a lack of proper thought. They have probably been put off reading full critical analyses of the PACE trial simply due to the complexities (as Don suggests). That will include many medical workers, benefits people, and people who make decisions about our treatment. So really that is why I am after a slow burn: to try to change the image of ME/CFS. Well, I can dream! But that means we have to be really accessible and persistent.

I have now set up the campaign page on the website. My attitude is that anything that is on the web cannot be regarded as secure. What would you like me to do: shall I post the link here on this thread, which has public access, or shall I post it on, say, the Community Lounge, which restricts it to members who have made 100 posts or more? I think the only concern really is how public should the list be of people whom we have contacted? It would give our critics an easy list of people to pursue, but it also gives our supporters a clear idea of what we have done.

As to harsh, aggressive criticism of the site: if you see it elsewhere, please do not get upset about it. We won't have much influence on those who favour such an approach, on either side, and do not intend to. Our target audience is the sort of people who do not react favourably to that sort of attack, and who respond to clear, accessible information. Keeping cool and reasonable is the way to go.

 

[biophile]

Well done! I like the format of 10 conclusions, and the interactive graphs. The multi-layered explanations should be good to cater for different audiences. Glad to see the mega-thread amounting to something afterall.

Regarding the simplest introductory explanation for the widest audience, I have seen detailed criticisms of specific aspects of the trial been downplayed or glossed over because they do not obviously impact heavily on the main conclusions of the trial. It may therefore be useful to begin with addressing each of these directly.

The 2011 Lancet paper of White et al state as their interpretation: “We affirm that cognitive behaviour therapy and graded exercise therapy are moderately effective outpatient treatments for chronic fatigue syndrome when added to specialist medical care, as compared with adaptive pacing therapy or specialist medical care alone. Findings from PACE also allow the following interpretations: adaptive pacing therapy added to specialist medical care is no more effective than specialist medical care alone; our findings apply to patients with differently defined chronic fatigue syndrome and myalgic encephalomyelitis whose main symptom is fatigue; and all four treatments tested are safe.”

In their authors' reply (response to criticism): "We suggest that the issue is not whether these treatments work and are safe, but how to make them available to those who might benefit from them."

So the main issues involving the conclusions are ...

• Were CBT and GET 'moderately effective'?

• Was APT representative of pacing as patients understand and practice it?

• Do the results apply to 'differently defined' CFS and ME whose main symptom is fatigue?

• Were APT and CBT and GET 'safe'?

• Have the authors adequately defended the methodology of the trial?

• Do the results justify a wide spread rolling out of CBT and GET for patients?

Graham also uses a good analogy to explain why patients are disputing the interpretations of the trial and concerned about the implications.