A Post of Gradtitude, Hope, and Optimism

[Jesse2233]

Hey everyone,

I'm new here and have been trying to learn and contribute as much as I'm able.

I see I'll have a lot to learn, but I want to take a moment and thank everyone for their support and kindness, and mention how grateful I am for the level of intelligence and insight on this forum

Thank you to the support, advice, information, and hope from @Hip, @Sushi, @eljefe19, @halcyon, @Gingergrrl, @Jonathan Edwards, @deleder2k, @Hutan, @Rose49, @Ben Howell, @lauluce and everyone and anyone my tired brain can't remember right now.

I'm also grateful to the all clinicians, researchers, and advocates working toward new treatments and a cure

Like Lucinda Bateman said in her report last year there are a lot of reasons to be hopeful and excited:

- Fluge and Mella are showing great promise with Rituximab and Cyclophosphamide, and based on the reports coming out of Kolibri and OMI, we have strong reason to believe Phase 3 will be a success

- Ron Davis, Robert Naviaux, and co are making breakneck strides in identifying a biomarker, explaining the underlying metabolics / genetics, and finding existing treatments to repurpose

- Jared Younger, Nancy Klimas, Kenny De Meirleir, Daniel Peterson, Derick Enlander, John Chia, Peter Rowe, Suzanne Vernon, and others have ongoing studies poised to show further breakthroughs

- Francis Collins and the NIH are increasing funding and studies

- The FDA is poised to speed up drug approval and reduce regulation increasing the odds that Ampligen and other drugs are approved

- More broadly the converging forces of Big Data, expanding biomedical research, increased philanthropic spending, artificial intelligence, nanotechnology, personalized medicine, and genetic therapy all point to an environment where new treatments and cures are more likely than ever before

Please add on anything I've missed!

 

[Gingergrrl]

@Jesse2233 It was so sweet of you to include me in your post of gratitude and hope! Your questions re: RTX have been very helpful for me to read and I am grateful to you for this and glad that you joined PR! I continue to learn new things here every day and have met several lifelong friends and am sure it will be the same for you. Am looking forward to getting to know you better in the future!

 

[Hutan]

@Jesse2233, thanks so much for mentioning me in your post. I can't imagine I said anything particularly useful and certainly I can't remember it.

But today has been a particularly rough day for me in a number of ways. And so your kindness and reminder of the growing reasons for hope was especially lovely.

The feeling of connectedness and understanding that I get from PR helps me keep plodding on so, yes, thank you to all who contribute here in so many ways.

 

[ash0787]

well there is one thing you might have overlooked, the information landscape is totally different now to when I got ill in 2015, I remember having a hard time trying to find out what was the difference between 'post viral fatigue / PVFS '
and chronic fatigue / ME.

The information I remember finding was mainly anecdotal stories in tabloid newspapers such as this one
http://www.dailymail.co.uk/health/article-1303098/Olympian-Roger-Black-beaten-Epstein-Virus.html
I based my understanding of CFS heavily on this article and what the NHS doctors told me.

Around one in 200 will go on to develop a more prolonged illness featuring persisting mental and physical fatigue and general lethargy.
'In a small number of cases this can become chronic fatigue syndrome, lasting months or years, which is a consequence of the viral effect on the patient's neuro immune system.
There is no active virus in the body in patients with fatigue syndrome. 'The body has undergone a change because of the virus which activates the neuro immune system – the way the brain talks to the body.
So without having an active infection, the symptoms of infection persist, but the body will slowly recover.'

I also would have definitely read the NHS page, which hasn't changed
http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

• severe – you're able to carry out minimal daily tasks, such as brushing your teeth, but have significantly reduced mobility, and may also have difficulty concentrating

Some of the main treatments include:

• cognitive behavioural therapy (CBT)
• a structured exercise programme called graded exercise therapy
• medication to control pain, nausea and sleeping problems

Most people with CFS improve over time, although some people don't make a full recovery.

If you look now though on google, OMF and meassociation are quite high on the search ranking,
I originally never heard of OMF, ron davis etc until I watched forgotten plague which wasn't until much later.