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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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one thing i will say tho is we have official reports saying we suffer GREATER disability and far lower quality of life than even MS patients. sorry that i can't link to any atm. certainly we have video and audio of Peterson and Klimas saying this. the thing is we get WAAAAY less money than the MSers and we suffer way more (sorry we just do). and that's because they have 'biomarkers in MS like plaques on MRI, spinal tap etc and we do not. I keep going on abt this, it all goes back to being RECOGNISED.No Daddodil. Because of Congressional Sequestration, NIH funding is very tight as alluded to by Lipkin. Many research labs across the country are having extremely difficult time securing NIH funding. Any research for funding will have to come via private foundation or donations.
MS research has been ongoing for the last 70 years or so and only have a few drugs available within that time frame. Although significant strides have been made throughout those years, treatment for progressive MSers is still a ways off. New promising clinical trials are under way. The MS patient community is equally fustrated by the lack of treatment options, funding and the attitude of doctors as those in the ME/CFS patient community.
Dr. Unger has thumbed her nose at us. It took her over ten days to deliver her August 30 denial to advocates, and it will likely take her over four more weeks to post a synopsis of her taped comments.
She writes about the need “not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.”
In the context of the complete devastation of ME, Dr. Unger should spare us her solicitude over the hardship of “an additional overnight stay for those patients who travel long distances to attend clinic.” Dr. Unger is selling us short.
one thing i will say tho is we have official reports saying we suffer GREATER disability and far lower quality of life than even MS patients. sorry that i can't link to any atm. certainly we have video and audio of Peterson and Klimas saying this. the thing is we get WAAAAY less money than the MSers and we suffer way more (sorry we just do). and that's because they have 'biomarkers in MS like plaques on MRI, spinal tap etc and we do not. I keep going on abt this, it all goes back to being RECOGNISED.
And Lipkin is the person who can actually nail down the cause for us and legitimise CFS; don't we at least want the world to know we have a legit disease??!!!
OK, I take your point, Dolphin.There are different levels of MS and there are different levels of CFS.
Also, a percentage with MS eventually die, in difficult circumstances. So probably ok to make this point here, but one would need to be careful outside of here as it might backfire.
Thanks.OK, I take your point, Dolphin.Dolphin said:There are different levels of MS and there are different levels of CFS.one thing i will say tho is we have official reports saying we suffer GREATER disability and far lower quality of life than even MS patients. sorry that i can't link to any atm. certainly we have video and audio of Peterson and Klimas saying this. the thing is we get WAAAAY less money than the MSers and we suffer way more (sorry we just do). and that's because they have 'biomarkers in MS like plaques on MRI, spinal tap etc and we do not. I keep going on abt this, it all goes back to being RECOGNISED.
And Lipkin is the person who can actually nail down the cause for us and legitimise CFS; don't we at least want the world to know we have a legit disease??!!!
Also, a percentage with MS eventually die, in difficult circumstances. So probably ok to make this point here, but one would need to be careful outside of here as it might backfire.
Sadly, I know of a couple of cases of long term ME/CFSers ending up w/ MS. And no, they weren't misdx'd from the start. They were classic cases and patients of the orig. drs.Thanks.
I might have been a bit quick with the reply after reading the first part of your message.
I think it would be great to be as recognised as Multiple Sclerosis and think we deserve it, or something close to it anyway. It would help in lots of ways. I agree.
Dr. Unger apparently wrote her negative response to the advocates' July 22 letter on August 30. A response had been requested by August 31. Unfortunately, her email was received only yesterday, more than ten days later, preventing any awkward follow-up questions during her conference call. Dr. Unger explained, “I did send a written response to the letter from the advocates via email to Donna Pearson, who is serving as the correspondent for this group. I have re-sent that message to be sure that it got through. I think maybe something happened in transit...in the translation....”Have I missed something here? I don't think we can expect instantaneous responses from people who lead government departments. 10 days seem reasonable to me.
I agree. I wish there was more focus on raising money for research all around the world. Now there are lots of local/state/regional/national groups but only a small percentage raise money for research unfortunately.Getting to the cause of me/cfs I personally feel is going to expose a lot of things for other illnesses as well.
the pathways involved I feel could uncover so much about the immune system and disease/disorders.
lipkins work ties well with the microbiome work and professor tates work. the dots are beginning to connect and there is bound to be more that I don't know of because im still learning.
along with this forum and face book it is important for local community societies all over the world for me/cfs to know of this research and how to get their funding drives directed to the most rigorous promising work that is happening.
there is power in numbers and a network needs set up btw them all. they estimate 40,000 affected in my small country alone
I really feel there is promising and extremely important validating research happening that needs good support by this network both for funding and lobbying the governments backing.
the only way governments will fund is if there is proof of disease and the proof of the cost it is having on them in health/economy.
these societies could be connected with each other by a representative on a forum the likes of this imagine how much could be generated funding wise.
just my thoughts :thumbdown:
Thanx Hope, that is really helpful and I really would try to do a lot of the things you say except that I'm not a US citizen and don't live in the US. So I am not "represented".
I will check out that book link though. If anything I wish i WERE American, just so I could actually DO something.
vli
Lipkin indicated that he has been in contact with both Tom Frieden, the head of the CDC, and Anthony Fauci, the director of the National Institute for Allergy and Infectious Disease, and that they understood how serious m.e. was.
havent they spent millions and millions on MS now? didn't that author of harry potter give millions to MS research? have they found an answer to that yet? is it really a matter of money?
People say that governments don't give enough to research. But in my mind the ME/CFS community (including its wider contacts e.g. family) don't give/raise enough either, although this has improved a lot in the last few years, thankfully.