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

[Dolphin]

The YouTube video combined a standard video, a couple of graphics and the race animation, taken at different sizes and frame rates. The software I used, Blender, was free, very powerful, and has hideously poor documentation. My brain hurts!

Thanks for doing that. I'll look forward to seeing it, and highlighting it.

 

[Graham]

Well, here it is, the Youtube video. I've tested it on a few people and they managed to watch it without throwing up (or throwing something at the screen.)

 

[Enid]

It's a hard battle still in the UK Graham (despite international research findings) - bury their heads in the sand UK medical establishment who ply their wares through to the thinking of GP's and the newly trained upcoming Docs - and we know misinformed. Science/Medical research on our side now - fill the airwaves with science so the nattering totally ignorant self important medics may learn medical understanding like all others moves on.

 

[Graham]

Well I'm going for the silly route! Proper scientific facts seem to go over their heads.

 

[Enid]

Yes it will do - the old guard Graham - not the free thinking new ones on the block now.

 

[oceanblue]

Well, here it is, the Youtube video. I've tested it on a few people and they managed to watch it without throwing up (or throwing something at the screen.)

Love the Blofeld-esque intro. And with this video, world domination really is an inevitability. Great work.

 

[Graham]

The first one we did had me dressed in white, with my back to the camera, then spinning round the chair and doing the chat. But we decided that the Blofeld image was too feeble, so went for the blue pieman in the rocking chair. So far two people have picked up the Blofeld bit, and nobody spotted the blue pie man.

Thanks oceanblue. I'm planning a series of them, each focusing on one different aspect. Have you worked out what the next one will be?

 

[Enid]

Small query Graham in your presentation - what exactly is SMC (standard medical care) in the PACE trial - any meds ? if so what for one wonders. This should be something they should specify. But please keep going. ..... standard anything here seems non existant ......still trying to find it. Disclosure by the authors would be interesting.....something more than a sticking plaster ???

 

[Graham]

Standard Medical Care was described as being more than you would get from your standard visit to a GP, although a couple of my friends get excellent treatment. Most of them were conducted by a psychiatrist (who of course is also medically qualified) and most of the others by a GP. All had, I understand, some reasonable experience of patients with ME. It included pain and sleep medication where appropriate, and, I believe, possible antidepressants. They also advised them about the illness in general terms.

All of this is off the top of my head (where nothing much else resides), so don't be surprised if the actual details are not quite right.

 

[Enid]

That's good to hear Graham. Reasonable in the absence of more knowledge.

 

[oceanblue]

The first one we did had me dressed in white, with my back to the camera, then spinning round the chair and doing the chat. But we decided that the Blofeld image was too feeble, so went for the blue pieman in the rocking chair. So far two people have picked up the Blofeld bit, and nobody spotted the blue pie man.

Thanks oceanblue. I'm planning a series of them, each focusing on one different aspect. Have you worked out what the next one will be?

Er, are you going to have a set of menacing steel teeth for the next vid?

 

[Dolphin]

(Off-topic, a little)

The first one we did had me dressed in white, with my back to the camera, then spinning round the chair and doing the chat. But we decided that the Blofeld image was too feeble, so went for the blue pieman in the rocking chair. So far two people have picked up the Blofeld bit, and nobody spotted the blue pie man.

Is there a character, the blue pieman, or are you being self-deprecating? (straight question)

 

[Graham]

Straight answer, haven't you noticed the "avatar" of the ME Analysis page of a blue pie chart man sitting in a rocking chair? Why do you think he hasn't got any hair?

Well, to be honest, that's a coincidence. Ian had a space in one of the pages, and used the idea of the Newcastle piechart to create this piechart character, then Mark thought it would be a good avatar for the site. I've already got Ian thinking about how to create the next animation.

 

[Dolphin]

Straight answer, haven't you noticed the "avatar" of the ME Analysis page of a blue pie chart man sitting in a rocking chair? Why do you think he hasn't got any hair?

Well, to be honest, that's a coincidence. Ian had a space in one of the pages, and used the idea of the Newcastle piechart to create this piechart character, then Mark thought it would be a good avatar for the site. I've already got Ian thinking about how to create the next animation.

Ok, thanks. I don't know how I missed that - I have a poster of it up on my wall.

 

[Graham]

I have now written to the Australian Broadcasting Corporation, where Richard Horton issued his challenge, pointing out that we have tried to engage him, but have been ignored. I asked them what sort of a discussion he had in mind, and as the challenges went out through them, what suggestions they had. Details on the campaign page.

 

[Dolphin]

Best of luck to Janelle Wiley who will be giving her oral CFSAC testimony tomorrow (Wednesday), sometime between 3:30pm and 4:30pm (Eastern Time).

She will talk about the ME Analysis project which she was heavily involved with: http://evaluatingpace.phoenixrising.me/homepageanim.html .

She will also talk about the paper:

Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

 

[oceanblue]

Wow, great stuff from Janelle, Graham and Tom Kindlon to get high profile opportunityto put the informed patient perspective.

 

[Graham]

If you are in the UK, then add 5 hours to the time - 8:30 to 9:30 for Janelle. And yes, she is a major player in the project! She only has 5 minutes though, so wants to pack a lot in to that spot. Also both Cort and Marly Silverman will be mentioning the project as well.

Good luck all. I know you'll do well.

 

[Graham]

The Phoenix link to the CFSCA session doesn't work for me, but this link does.
http://www.hhs.gov/live/

 

[Dolphin]

The Phoenix link to the CFSCA session doesn't work for me, but this link does.
http://www.hhs.gov/live/

http://forums.phoenixrising.me/index.php?pages/CoveritLive1/ is working fine for me on my PC, along with http://www.hhs.gov/live/, - they are different.