Has the Walter and Eliza Hall Institute heard of ME/CFS?

[Persimmon]

There's just been a thread started on a promising research finding coming out of the Walter and Eliza Hall Institute ("WEHI"). That's prompted this post.

WEHI has done lots of amazing things. I think it was the first research institute anywhere in the world that was devoted to immunology, thanks to a trailblazing decision by Nobel Prize winner Sir McFarlane Burnett. Back in the days when hardly anything was known about the immune system, Burnett decided this was a promising field: he unilaterally declared that WEHI was going to switch from its previous focuses and that it would become a dedicated immunology research institute. They've been a pre-eminent force in immunology ever since.

That said, I have a gripe with WEHI - they have a huge budget and something like 800 dedicated researchers; operate to very high standards and devote themselves to immunology... but, as I understand it, the Institute is yet do any research on ME/CFS. One can't help thinking that if Burnett was still in charge, WEHI would have been the first in, rather than the last.

To illustrate the point by comparison, remember that Eng Tan got the Scripps Institute working on ME/CFS long ago - in the early 1990s they were publishing research findings that ME/CFS is a unique autoimmune disease.

WEHI, where are you?

 

[Allyson]

Yes I agree that WEHI do fantastic work, Persimmon; for example Jason Tye-din and colleagues there have created and are trialling a vaccine for coeliac (another disease that used to be thought imaginary til they found the cause).

I do hope they are onto us!

 

[Allyson]

Forgot to add - I saw Dr Jason Tye-Din via the royal melbourne hospital and he was FANTASTIC for gut issues,
put me on and IBS trial and taught me about the low FODMAPS diet
and also put me onto lactase tablets which are great
so i can t recommend him highly enough.

 

[Allyson]

Features of EDS
Joints
joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); very early onset of osteoarthritis.
Skin
soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing
Miscellaneous
chronic, early onset, debilitating musculoskeletal pain, arterial/intestinal/uterine fragility or rupture,scleral fragility, poor muscle tone, mitral valve prolapse, and gum disease.
Other Complications
Chronic Pain, Chronic Fatigue, Dysautonomia, Gastrointestinal problems, IBS, Bleeding Problems,
Blood Pressure problems, Organ prolapse, Headaches, Dizziness, Vertigo, Osteoporosis, Osteoarthritis, Chiari,
Problems with EDS seem vague and un-related. Doctors and patients rarely make the connection that many different complaints are coming from one problem. Many doctors have never heard of EDS and most who have dont understand it, they think it only makes you flexible or gives you strechy skin. Most sufferers go years and even entire lifetimes with no proper diagnosis. It is important to see a geneticist who is educated in conective tissue disorders & Ehlers-Danlos syndrome.
For more information please visit EDNF.ORG