Saturday, July 22, 2017

Day 17 Tips and Tricks for Sofa Heroes: Research

Facts are always friendly, Help me fund the OHC Study
Hi Everyone!

Today I'm going to talk about some of the current research and hypotheses presented for the cause and treatments for ME/CFS.
There is a massive umbrella of illnesses without an understood cause or cure, so people with ME/CFS can often relate to the life experience of people diagnosed with all types of "invisible illnesses". The beautiful thing about science is that discovering something in any illness is a step forward in helping so many more people - especially along the spectrum of neuro-immune illnesses, so it's usually all a net benefit.

Please put your critical thinking caps on - ongoing research means it's a work in progress - and there have been dangerous initial studies made in the past (like the controversial study that XMRV, a retrovirus, was the cause of ME/CFS which made a lot of people go out and spend a lot of money testing for this retrovirus, and the CDC even sending out a letter asking people with ME/CFS not to reproduce - this was later retracted, and the ongoing struggle against the PACE Trial/ NICE guidelines recommending cognitive behavioural therapy and graded exercise therapy as a treatment, making most patients sicker because it ignores the metabolic degradation in post exertional malaise).

For now, here's some research going on in the field. I like to get updates on research because it helps me feel like I'm not all alone out here - that there are excellent, brilliant people out in the world doing great research to discover why we get ME, how to cure it, or how to just feel better.



If you ever feel like the world has forgotten about ME - Just take a look at this massive sheet of current investigations going on in ME/CFS.   I want to thank Paul Watton for making this available.

You can see how because ME/CFS affects multiple body systems, there are studies going on in virtually every field, from infectious disease to neuro immune to endocrine system and gut bacteria to neurology and metabolic studies.

Here's some of the ones I'm following below:

The Open Medicine Foundation is working on the End ME/CFS Project to find a clinically diagnosable biomarker in ME/CFS.  They're working on a metabolics study focusing in the dysfunction of the mitochondria, and studying the most severely ill patients for a big data study at Stanford University.  I'm a monthly supporter of The OMF as they have consistently been involved in research and activism, and have personal investment in these studies as shown in Forgotten Plague (I'll share more info on documentaries later).
If reading is too much, you can keep up to date with them on their OMF YouTube channel.

Update July 31 2017 - Stanford research group study showing chronic inflammation disorder based on dozens of cytokine variations between healthy controls and severely ill people with ME/CFS.

Here's a quick video on the theories presented about infection in the vagus nerve, or clumps of infection on various nerve points, the basis of many ongoing studies.

Here's some interesting results coming out of the subgroup study going on UAB's Neuroinflammation Pain and Fatigue Lab showing that there could be an auto-immune group, and a chronic infection group, as well as further subgroups. This means that trying to treat all people with ME/CFS the same way could be a huge misunderstanding.

As far as research for treatment goes, the most interesting to me right now is the study on Rituximab - a treatment used for Lymphoma, that so far has some promising news for wiping out ME/CFS in some patients (for the subtype that is auto-immune, again the importance of discovering the subtypes).

I'm raising money with this 30 day blog project for The Optimum Health Clinic Foundation which is working with the University of Surrey on a randomised clinical trial to prove that their integrative approach helps many people with ME/CFS (some have recovered with their approach, many find their lives much more manageable and symptoms improved).  They're doing this so that the integrative practices can be supported by the NHS here in England so that income level isn't so much a factor in helping patients feel better. I have been a patient with the OHC since 2010 and they have helped me immensely in managing my symptoms and living better.

What are your favorite studies going on right now?
Hope this helps, I hope you feel better today, and I'll see you tomorrow!

Go to Day 1 for the full table of contents of this project 

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