Seeking An Elusive Cure - article on Maureen Hanson and her Collaborative Research Center

[Andy]

Two professors from Cornell University and Ithaca College are combining on a study taking on one of the world’s strangest ongoing medical phenomena, a disease that affects more than a million people in the United States yet largely remains a confounding mystery.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, commonly referred to as ME/CFS, is a debilitating disease that can often leaves its victims bedridden for months and years on end, without much hope in sight. Patients suffer a range of symptoms, marked most prominently by severe fatigue, chronic pain and flu-like symptoms, which must last at least six months before ME/CFS can be properly diagnosed. The nature of the disease, and the behavior it manifests, lends itself to doubt from observers. Victims are dismissed as dawdling layabouts, suffering from a lack of motivation or laziness instead of an actual medical condition, leading to a lack of attention and funding to address and investigate the illness.

Cornell’s Maureen Hanson and Ithaca College’s Betsy Keller, who received a $9.4 million grant from the National Institute of Health to establish a center of research on ME/CFS, may be part of a changing tide. They are one of three center grants that were funded by NIH, which is also sending money to The Jackson Laboratory in Connecticut and Columbia University in New York for research into different aspects of the disease.

Hanson, who will serve as Principal Investigator, and Keller, who will head the center’s clinical core, have assembled a team of doctors and patient advocates to recruit and examine patients with ME/CFS, and will focus on one particular portion of the disease, known as post-exertion malaise (“Post-exertional malaise” is the widely-accepted term within the science community, though patients have begun to push back against the phrase in favor of terms like “post-exertional relapse”). Both have extensive experience with ME/CFS and have spent years trying to reveal answers for those suffering.

http://www.ithaca.com/living/person...cle_6f583b1c-2252-11e8-ac43-bf8bfd211427.html

 

[ahimsa]

Thanks for posting that link, Andy. This is one of those fairly short articles that I find helpful to share with friends/family who know very little about ME.

I liked the parenthetical comment (which I've bolded) the author added about about PEM:

Hanson, who will serve as Principal Investigator, and Keller, who will head the center’s clinical core, have assembled a team of doctors and patient advocates to recruit and examine patients with ME/CFS, and will focus on one particular portion of the disease, known as post-exertion malaise. (“Post-exertional malaise” is the widely-accepted term within the science community, though patients have begun to push back against the phrase in favor of terms like “post-exertional relapse”).

There's also a nice quote from Carol Head from Solve ME/CFS:

“This disease has been ignored, denigrated for decades with virtually no CDC attention and virtually no NIH research funding,” Head said. “On the other hand, in the last two years we have seen some movement, so we are hopeful. But it’s just starting from such an egregiously low starting-point.”

 

[BurnA]

Is anyone else surprised to hear about "post exertional relapse" ?

It's new to me and I can't say I prefer it.

 

[Andy]

Is anyone else surprised to hear about "post exertional relapse" ?

It's new to me and I can't say I prefer it.

Just been trying to think of alternatives, Post Exertional Exacerbation has an unfortunate acronym, Post Exertional Symptoms maybe? I'd probably favour that because I develop additional symptoms, as well as increased levels of existing ones. Changing it about, Symptom Aggravation after Exertion (SAaE/SAE), although, to me, it doesn't cover additional symptoms occurring?

 

[Esther12]

Is anyone else surprised to hear about "post exertional relapse" ?

It's new to me and I can't say I prefer it.

I was thinking that.

We're unlikely to have great terminology until we have a better understanding of what's happening.

 

[Binkie4]

Post exertional crash??

 

[Webdog]

Is anyone else surprised to hear about "post exertional relapse" ?

It's new to me and I can't say I prefer it.

I don't mind post-exertional relapse. Malaise sounds a lot like fatigue.

The Bateman Horne Center uses both terms on their home page.

 

[WillowJ]

Is anyone else surprised to hear about "post exertional relapse" ?

It's new to me and I can't say I prefer it.

I’ve heard it before.

Some people don’t like malaise, as they feel it’s vague or has other meanings.
(I don’t mind it much, but that’s probably just my own background as it sounds a lot like a symptom of many types of infectious diseases to me, and I feel like that a lot, especially during crashes.

But, if it sounds different to others that’s just reflecting their different background; obviously we all have different experiences, and it’s a fair point that a good description should either not be ambiguous or at least well explained, and I think that’s not really going on here outside of our in groups.)


Relapse I think is intended to signify that symptoms in general get worse, rather than there’s this one symptom that occurs.


People say different things trying to make this PEM concept more clear.

We're unlikely to have great terminology until we have a better understanding of what's happening.

+1

 

[Trish]

For me, PEM has two components -

- I feel much sicker - all my symptoms worsen and I gather a few extras.
- and my ability to function plummets.

I think relapse describes that combination better than malaise, which only addresses the 'feel much sicker' aspect. I therefore prefer post exertional relapse.

 

[Valentijn]

I don't think "relapse" is completely accurate, but only because a relapse is more serious than PEM (usually), so I don't find it objectionable or offensive at all. I prefer "exacerbation" for accuracy, though the PEE acronym is problematic.

But perhaps "post" could be replaced with something like "delayed"? That could also help with some people thinking PEM (versus other symptoms) starts immediately after exertion, or even during it Delayed Exertional Exacerbation doesn't sound too bad, though I like Post Exertional Relapse or Delayed Exertional Relapse as well.

 

[adambeyoncelowe]

Post-exertional neuroimmune exhaustion works for me.

 

[Seven]

Post-exertional neuroimmune exhaustion works for me.

That one spells Penis in Spanish! why we do not like that one (my kid thinks is hilarious).
Post-exertional crash, describes better for me. I do not have a relapse every time I have PEM. Crash = I go back to base number. Relapse, I go lower and do not gain back to base without therapy (selftherapy, which changes every time)