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Sept 10: CDC 'conference call' including Unger and Lipkin

SOC

Senior Member
Messages
7,849
A possible problem with a protest in Washington is the numbers might not be too big: 500 (?) people (say) would be a great achievement in terms of the ME/CFS community but it's not exactly a huge march.

But if people could use that energy to lobby their politicians, that'd be great.


True. But if we can't get the numbers, that's our own fault to some extent. There are a lot more of us than there were HIV patients back in the days of the protests. We'd need a level of will that we may not have at the moment. It would also help if we had healthy supporters, which we are lacking in any significant numbers. We need a turn-around in our public relations before we can get the kind of support we might need to sit on Washington. ;)

Or we just suck it up, accept the consequences, and do this freakin' thing! [The crowd cheers. Flags wave.]
 

SOC

Senior Member
Messages
7,849
maybe a "bed-in" like john lennon did

I'm not sure I like the inferences people could (and would) make about us lying around in bed. Looking miserable as hell, but sitting upright in wheelchairs might be more effective.

I'm not really serious about a sit-in on the Capitol steps. If someone organized it, I'd be there, but truthfully I don't see that we have the organization or the whatever-it-takes to make it happen at this time. We don't even have an major advocacy organization that handles media or events yet.
 

Nielk

Senior Member
Messages
6,970
I think the time is ripe for a protest. I don't know how else we can be heard. Even if its only 500 of us. We would probably need wheel chairs. I'm sure we could galvanize some family members and friends to come along. We need to start taking charge of our destiny.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Okay, "march" could be a bit much. A sit, maybe? ;)

Did you see they staged a mass 'all fall down' outside Parliament in London the other month for ME? Not sure what impact it had really - always hard to tell - but it got across the point I think.

1-copy-212x300.jpg
 

SOC

Senior Member
Messages
7,849
I think the time is ripe for a protest. I don't know how else we can be heard. Even if its only 500 of us. We would probably need wheel chairs. I'm sure we could galvanize some family members and friends to come along. We need to start taking charge of our destiny.

Since my future son-in-law recently moved to DC, I'm pretty sure I could get four people there. ;)

Since we have top researchers begging for research money, this probably is the time to do something big. If Lipkin et al could come through with something attention-getting, even if it's far from The Answer, that would be a huge help.

[Getting all psyched to struggle down to the basement to paint a sign that says,
I'm NOT fatigued, I'm SICK! ;)]
 

aimossy

Senior Member
Messages
1,106
I am really wondering if the time is now ripe for all me/cfs societies around the globe to have some way of communicating with each other in order to organise support funding drives/awareness drives.
we have now got researchers working for us I think its time we start organising to help them.
im just throwing the idea in and wondering how it could be started.
I think the key is start small and it will build.
a forum for representatives of each society in a few countries online.
there would have to be clear guidelines for the purpose of it.
for example: to keep these societies abreast of current rigorous valid research globally.to co-ordinate world me/cfs day awareness/community donation drives.inform each other of whats going on in these societies that is useful.
each society can choose which studies they might donate/if at all.
10$ from every person who has me/cfs in a few countries equals $$$$$
these funding drives could be a matter of sitting outside a supermarket/shopping mall with a sign/hand out cheap phamplets.happens a lot here and people do donate.(no need to do tiring sausage sizzles)
would take someone well known to start and make approaches/offer the idea/ and support to set up online network.
one person I can think of to give it the start up but its too cheeky to mention cos they prob already done enough.
am I being tooo ambitious.
I would also just donate online myself but I think we need a bigger pool and get the word out now.....this shit is rea!l do you know someone who has this? probably! please help out? I do think its time.
we could get heaps of countries societies involved..USA,UK,Ireland,Denmark,Sweden,Spain, Germany,New Zealand............?????
maybe too ambitious but I do think its time to be talking to each other more with respect to getting organised and think about what we can all do together to strengthen us.
:)
 

Dolphin

Senior Member
Messages
17,567
Did you see they staged a mass 'all fall down' outside Parliament in London the other month for ME? Not sure what impact it had really - always hard to tell - but it got across the point I think.

1-copy-212x300.jpg

I read in one of the magazines recently they were hoping for media coverage but didn't get it. (That's what the story said; maybe there was a tiny media outlet somewhere that did cover it).
 

Dolphin

Senior Member
Messages
17,567
I am really wondering if the time is now ripe for all me/cfs societies around the globe to have some way of communicating with each other in order to organise support funding drives/awareness drives.
we have now got researchers working for us I think its time we start organising to help them.
im just throwing the idea in and wondering how it could be started.
I think the key is start small and it will build.
a forum for representatives of each society in a few countries online.
there would have to be clear guidelines for the purpose of it.
for example: to keep these societies abreast of current rigorous valid research globally.to co-ordinate world me/cfs day awareness/community donation drives.inform each other of whats going on in these societies that is useful.
each society can choose which studies they might donate/if at all.
10$ from every person who has me/cfs in a few countries equals $$$$$
these funding drives could be a matter of sitting outside a supermarket/shopping mall with a sign/hand out cheap phamplets.happens a lot here and people do donate.(no need to do tiring sausage sizzles)
would take someone well known to start and make approaches/offer the idea/ and support to set up online network.
one person I can think of to give it the start up but its too cheeky to mention cos they prob already done enough.
am I being tooo ambitious.
I would also just donate online myself but I think we need a bigger pool and get the word out now.....this shit is rea!l do you know someone who has this? probably! please help out? I do think its time.
we could get heaps of countries societies involved..USA,UK,Ireland,Denmark,Sweden,Spain, Germany,New Zealand............?????
maybe too ambitious but I do think its time to be talking to each other more with respect to getting organised and think about what we can all do together to strengthen us.
:)

I generally agree with the general idea.

However, I think we don't necessarily need a new infrastructure to do it: if individuals can tell groups of good research, hopefully they will start fundraising. A lot of groups will already be connected to some sort of network to try to keep up-to-date. I don't think there needs to be a new infrastructure before people start fundraising like this.

A few people have told me this sort of fundraising doesn't happen so much in the US. But it does certainly happen in some countries. In Ireland, this has been used to raise money for research.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
we have now got researchers working for us I think its time we start organising to help them.
im just throwing the idea in and wondering how it could be started.
I think the key is start small and it will build.


Hi aimossy - just wondering if you can format your text to make it clear where paras and sentences start, by starting new sentences with a capital letter and leaving a space between paras? You're maybe having trouble because you're using a phone or something, though! :) Or maybe this is the new fashion and I'm just old. o_O
 

aimossy

Senior Member
Messages
1,106
LOL!!
Sorry,
It,s actually my brain. It uses less energy for me to be slack like that, so it is easier for me.
However it is obviously troublesome for others to read.
I will try harder.;)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
LOL!!
Sorry,
It,s actually my brain. It uses less energy for me to be slack like that, so it is easier for me.
However it is obviously troublesome for others to read.
I will try harder.;)


Thanks! That's good of you - I'm sorry it's harder work. :)

But quite a few on here have cognitive problems that affect their reading, so the clearer you can make it, the more readers you'll get, and that was an interesting post!:thumbsup:
 

snowathlete

Senior Member
Messages
5,374
Location
UK
A possible problem with a protest in Washington is the numbers might not be too big: 500 (?) people (say) would be a great achievement in terms of the ME/CFS community but it's not exactly a huge march.

But if people could use that energy to lobby their politicians, that'd be great.

We could also erect a huge screen there and throughout the day cycle through live skype shots of thousands of patients in their beds/chairs, whatever.

I think these ideas should be ambitious, and you just need determined people, or even a single person, to make these things happen. Things take time and effort, and energy, and because we are sick, they often take longer than we'd lilke, but ultimately, if people want these things then they have to get involved. If people arent already doing it they just need to start doing it themselves, invite others to join, be determined and make it happen as quickly as health allows. Progress does occur this way, but it requires people to take action.
 

Ember

Senior Member
Messages
2,115
Yes, I know, but thanks for looking into it.
I was referring to the published data, in his 2005, 2007 & 2013 papers.
So was Dr. Snell referring to the published papers, and he describes the 2013 paper as a replication study with “slightly different results.” The 2013 study confirms the diagnostic utility of the Stevens Protocol.

Considering that Dr Snell's latest paper supersedes his 2005 paper... do you think the primer now needs updating?
The ME Primer was published less than a year ago, but it states that it will be updated when appropriate. The timing of an update is for the Panel to decide.

Agreed, as long as Unger is aware of Dr Snell's 2013 CPET research results, and not just the 2005 paper which is referenced in the ME primer.
The Primer references the 2007 study as well. Dr. Unger is fully aware of the 2013 CPET research results. She spoke immediately after Dr. Snell at the FDA workshop.

But I still think her post-exertion cognition tests may prove to have some merit. Cognitive tests are a fairly objective indicator of cognitive performance, aren't they? (I do not know much about the merits of cognitive tests, but I assume that they can be helpful objective indicators of cognitive function. And if they are, then they may provide a useful objective indication of post-exertional symptom exacerbation.)
Dr. Unger has chosen to use post-exercise online cognitive testing to measure neurocognitive impairments, one of four symptom categories included in the Neurological Impairments domain of the ICC:
1. Neurocognitive Impairments
Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
Short-term memory loss: e.g. difficulty remembering what one wanted to say, what
one was saying, retrieving words, recalling information, poor working memory

You can hope perhaps that some future update of the ME Primer will include online cognitive testing here:
Neurological & static testing: *SPECT scan with contrast - ↓ cortical/cerebellar region cerebral blood flow (rCBF) in the frontal, parietal, temporal and occipital & brain stem regions - more brain involvement indicates increased illness severity,MRI of brain(increased T2-weighted images in high white matter tracts & loss of GM volume) & rule out MS, MRI of spine (dynamic disc bulges/herniation , stenosis), sleep study (stage 4 sleep, sleep pattern & rule out treatable sleep dysfunctions – upper airway resistance syndrome, sleep apnea, etc.)
Dr. Unger has slipped her own intransigence behind a more compelling event.:ninja:
 

Ember

Senior Member
Messages
2,115
Here's Cort's take on Dr. Unger's proposed cognitive testing:
The study will attempt to identify cognitive declines in patients after exercise. Let’s be clear about one thing: as distressing as the cognitive declines are for ME/CFS personally, no-one in the research world is grasping just how horrible the cognitive declines are in ME/CFS. This is because they appear to be fairly mild relative to disorders known to produce significant cognitive problems. It’s possible that one fifteen minute exercise period to exhaustion will produce off-the-charts cognitive dsyfunction in ME/CFS over two days, but I doubt it.

My guess is that reading the results will not cause outside researchers to gasp, clean their glasses, and then read the study again to make sure they got it right.

Besides the cognitive tests, the CDC will examine pain and symptoms. Increases in these after exercise have been abundantly documented by other groups.

That’s it! Unless the description of the study is sloppily written, other testing is not going to be done in the 48 hour post-exertional testing period.
 

Nielk

Senior Member
Messages
6,970
The further danger of this post one day test cognitive and fatigue patient assessment is that even if they will report abnormalities, the study can claim that these are subjective! (back in our face)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
So was Dr. Snell referring to the published papers, and he describes the 2013 paper as a replication study with “slightly different results.”
And what exactly does "slightly different results" mean in terms of the scientific data?

I recommend that you read the PR article. It's very informative:
http://forums.phoenixrising.me/inde...matic-drop-in-me-cfs-exercise-capacity.24485/

The 2013 study confirms the diagnostic utility of the Stevens Protocol.
But you haven't provided any evidence for this assertion, beyond quoting Dr Snell's anecdote that the results are 'slightly different'.


I don't think the 2013 study "confirms the diagnostic utility of the Stevens Protocol."

I can't find much specific into re the Stevens Protocol, but it seems to be based on "an inability to reproduce values for oxygen use on the second test at both peak exercise and at the anaerobic threshold".
http://www.research1st.com/2011/11/18/pfl-testing/

So that means the Stevens Protocol is, or was, based on VO2 peak and VO2 AT. (AT = anaerobic threshold).

But the 2013 study did not yield significant results, for VO2 peak, as far as my interpretation goes.
Instead, the 2013 study demonstrated that Watts output at anaerobic threshold (VTWL) gave highly significant repeat test results.

And, actually the VTWL results are much more useful than the VO2 peak results because they are more objective.
(The anaerobic threshold is a more objective measure than peak exercise.)

I've just re-read the PR article, and my own interpretation of the 2013 results is confirmed in it, including in this question put to Dr Snell:
I asked Chris Snell if he was surprised by the finding. "No", came the reply: the initial study was small making the findings less robust, and he said that a much bigger effect on VT than VO2 max has been seen in the clinic too.

There's no point in promoting the VO2 peak repeat CPET test if it doesn't provide meaningful test results.

However, reading the article, it is clear that Dr Snell still sees merit in peak testing:
Given that it's hard enough for people with ME/CFS to do one maximal test, let alone two, these results create the temptation to just run the second test as far as the Ventilatory Threshold and forget about VO2 max. But Chris Snell stressed that the Workwell Foundation remains committed to the repeat-maximal approach. First, VT can't be measured on the fly so they wouldn't know when to stop the test. And perhaps more importantly, the post-exertional effect appears to differ by patient, with some showing a greater effect on peak measures and others at VT. Dr Snell suggested that varying post-exertional responses may well reflect different underlying pathologies.