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Reasons for hope, 2016 :)

Sasha

Fine, thank you
Messages
17,863
Location
UK
Excellent post from another thread:

There is much going on in the ME world as of late. I will list a few and there maybe some overlap from other peoples posts. This helps me see hope as well even when things seem very grim. Here is a list of whats going on that i know of or that I have heard of:

- PACE Trial being retracted as per Kati [edit by Sasha: there is pressure for certain analyses to be retracted but this is not yet happening]
- OMF Study on the severely ill
- NIH Study
- Norway and Rutuximab and Cychlo
- Firing of Hemispherix CEO and hopes for Ampligens approval
- Levine, Peterson, Lipkin are working together on something as per Levines recent talk
- Lipkin study
- Jarred Younger and Neuro Inflamation ( he is having to turn away students cause of so much interest)
- Stuff out of Harvard and Small Fiber Neuropathy and FM and possible link to ME/CFS (Dr Oaklander)
- Some interesting work that talks about Anti adrenergic receptors and ME, Rutuximab and POTS
- First official protest by MEAction in Washington DC (If you can help out please do)
-Work out of Simmaron Research and Dan Peterson
- grumblings out of the UK and Canada about Rutuximab trials they are waiting on Norways results as per what I can see from Canadas perspective.
- Dr Navaiux and OMF finding clues in the Mitochondria already, part of OMF
- Dr. David Bell joining OMF
- potential Biomarker out of Australia

I just one to point one thing out we know Rutuximab is one heck of a serious drug. Its used for Lymphoma, other cancers, autoimmune disease, etc. If approved for ME we overnight become part of the most serious disease on the Planet....they can't deny it anymore. Further once this happens and it is approved it would be smart of our organizations to throw in everything else about biomarkers, NIH Study, OMF, Virus Hunter, OMI findings.....you get the picture.

We are close, I think once PACE is demolished the flood gates will open Media will run with this. We will get more funding from NIH and heqlth authorities. Not to mention once PACE is done with...biomarkers are found...then big pharma will be all over us ME/CFS'ers like a fat kid on a smarty.....there are millions of us worldwide....

Hold on history is going to be made and we will recieve help.
 
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charles shepherd

Senior Member
Messages
2,239
As far as the UK is concerned, it is clearly not accurate to state 'PACE trial being retracted' and I am not aware of any firm information confirming when and where the proposed clinical trial of rituximab is going to take place

It might be worth adding that here in the UK there are a number of research studies being funded in relation to autonomic nervous system dysfunction, immune function, muscle and mitochondrial function, neuroimaging, and the ME Biobank at the Royal Free Hospital will shortly be 'open for business' to supply blood samples to researchers who require them
 

Tuha

Senior Member
Messages
638
I always try to be optimistic and many things already look better in Me world. But this schientific world works so slowly. How many times did we already hear that there are promising results and so on? I start to have impression that it can continue like this another 30 years. But till now there is no efective treatement. For me to get hope it means to get an effective treatement which would decrease the level of exhaustion by at least 50 %. The other symptoms for me are not so bad and I got used to them but the exhaustion is something else.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I always try to be optimistic and many things already look better in Me world. But this schientific world works so slowly. How many times did we already hear that there are promising results and so on? I start to have impression that it can continue like this another 30 years. But till now there is no efective treatement. For me to get hope it means to get an effective treatement which would decrease the level of exhaustion by at least 50 %. The other symptoms for me are not so bad and I got used to them but the exhaustion is something else.

I think Jarred Younger's fast-track clinical studies unit is promising for that - plus anything that cracks the mechanism could indicate off-label/over-the-counter approaches without the need for lengthy trials...
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I always try to be optimistic and many things already look better in Me world. But this schientific world works so slowly. How many times did we already hear that there are promising results and so on? I start to have impression that it can continue like this another 30 years. But till now there is no efective treatement. For me to get hope it means to get an effective treatement which would decrease the level of exhaustion by at least 50 %. The other symptoms for me are not so bad and I got used to them but the exhaustion is something else.

i would think the same if it wasnt for how potent and serious the drugs being researched are. Rituximab & cyclophosphamide, are no diffuse lightweighters in their mechanism of action.. On the other hand, OMI & Stanford are not be frowned upon either, as institutes.

ME-patients have been promised things before, but not on the same scale that we see in the makings as of now.
 

Tuha

Senior Member
Messages
638
I follow all these stuffs and I hope it will soon lead to an effective treatement. But what I learnt the last years if scientists say that there are positive results it can take another 30 years to get a treatement option. But let´s hope this time - anyway we dont have another possibility
 

SB_1108

Senior Member
Messages
315
Lipkin Study - Anyone know the status? I thought it was supposed to come out this Spring? Its been one week and I can't take much more! ;)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Lipkin Study - Anyone know the status? I thought it was supposed to come out this Spring? Its been one week and I can't take much more! ;)
There are multiple Lipkin studies underway, and I think the largest project is only just getting started, and will take some time to complete yet, so I'm not sure if we should be expecting any major announcements this spring, but sometimes news comes out of the blue, unexpectedly. We'll be sure to share any updates we get.
 
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SB_1108

Senior Member
Messages
315
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SB_1108

Senior Member
Messages
315
i think they said in the spring.

Who volunteers to email Lipkin and ask him? :rolleyes::D:rolleyes:
Certainely someone has emailed him before?
Sometimes getting an estimate is all we going to get, depends on where they are at, submission/peer review/acceptance/publication...

Oh the wait..:cool: