Daffodil
Senior Member
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maybe a "bed-in" like john lennon did
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
maybe a "bed-in" like john lennon did
Okay, "march" could be a bit much. A sit, maybe?
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.
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.
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.
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.
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.
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.
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.
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.Yes, I know, but thanks for looking into it.
I was referring to the published data, in his 2005, 2007 & 2013 papers.
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.Considering that Dr Snell's latest paper supersedes his 2005 paper... do you think the primer now needs updating?
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.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.
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: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.)
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
Dr. Unger has slipped her own intransigence behind a more compelling event.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.)
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.
And what exactly does "slightly different results" mean in terms of the scientific data?So was Dr. Snell referring to the published papers, and he describes the 2013 paper as a replication study with “slightly different results.”
But you haven't provided any evidence for this assertion, beyond quoting Dr Snell's anecdote that the results are 'slightly different'.The 2013 study confirms the diagnostic utility of the Stevens Protocol.
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.
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.