Quotes from scientists who appreciate the support of PWME

Sasha

Sasha

Senior Member (Voting Rights)
While the UK BPS school seem to push a narrative of vexatious, dangerous patients, other scientists have praised PWME for their support.

I thought it would be useful to collect those quotations - not least so that people can tweet them in response to the other narrative - but I can't remember where I've seen them! Pretty sure that some of the most recent came out of one of the recent Stanford meetings but I don't know where a link would be.

Anybody?
 
Sasha said:
While the UK BPS school seem to push a narrative of vexatious, dangerous patients, other scientists have praised PWME for their support.

I thought it would be useful to collect those quotations - not least so that people can tweet them in response to the other narrative - but I can't remember where I've seen them! Pretty sure that some of the most recent came out of one of the recent Stanford meetings but I don't know where a link would be.

Anybody?
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I think @Jonathan Edwards says we're awesome from time to time. Maybe he's got a good quote already, or would like to come up with a new one :emoji_smirk:
 
The Norwegian paediatrician professor Kristian Sommerfelt described his young ME-patients as incredibly brave.

Maybe a tad off-thread but I also really liked it when doctor Katarina Lien (doing a PhD on ME and exercise) introduced herself in a lecture with: I am an ME-researcher, and proud of it!
 
@Phoebe lists some good quotes on her blog at https://puffinsandpenguins.wordpress.com/2017/01/20/post-nine-why-i-write-this-blog/
Not convinced that ME is that debilitating?*

“I split my clinical time between the two illnesses (ME/CFS and HIV), and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.”– Dr. William Reeves, former CDC Chief of Viral Diseases Branch

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).

“[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

“The good news is, these patients don’t die. The bad news is, these patients don’t die.” – Ron Davis, California-based geneticist whose son has ME/CFS
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Thanks, guys, but can I please bring the thread back to its topic, which is: quotes from scientists who are expressing appreciation for the support that they get from PWME.

The point is to gather such quotes to contest the narrative that PWME are regarded fearfully by scientists.
 
Katarina Lien mentioned above, said this in a speach thanking for a donation towards research - may 10th this year. She is truly disharted over the narrative about "militant angry ME activist", and do what she can to help the situation, engange with other doctors/researchers with a psycosomatic view, are a member of the largest norwegian facebook group for patients/carers etc.

(translated via google - and sorry about my bad english :) )

"It is rewarding to work with ME patients. It is not an unhappy and difficult group, all they ask is to be met in the same way as all other patients, and all other people are met to be seen, heard, believed. None of you expect me to do miracles when I have you at the doctor's office, and we who work with ME, we think there are striking many who thank us afterwards, with flowers and tears in your eyes just because we've behaved normally. With common decency. That we have treated people properly. Because it is obviously still a shortcoming for ME patients, and I think it's sad, and that's what drives many of us researching this to work on. I was very touched, thank you very much."

http://www.serendipitycat.no/2017/0...me-pasienter-sier-lege-forsker-katarina-lien/
 
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Good idea Sasha :thumbup: Simon Carding said to the BBC Look East TV journalists in January 2017 (will listen again to get the actual quote) something like "None of this would be possible without the patients". The report is on youtube in two parts as the late evening news edition included a studio interview and the links are here: http://www.investinme.org/IIME-Newslet-1701-02.shtml

ETA: The quote is from the studio interview.

“We would not be doing what we're doing today if it weren't for the money that's produced by, or offered by, the patients themselves so it's entirely their efforts in raising funds that's allowed us to get to this point now”.

Professor Simon Carding on BBC Look East TV 28th January 2017.

(Btw off-topic of this thread, but there's currently £150 left up for grabs from a matching donation offer in November for anyone wishing to donate to support this work - https://www.justgiving.com/fundraising/nomenbar4me)
 
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This enitre post by Leonard Jason, reflecting on how input from the patient community has guided his work over decades, and made it better - ending with:

"I want to again thank the patient community for working so closely with me over a quarter of a century to help guide my team’s research, to inform us about what were the critical issues that needed to be focused on. I think we should all be grateful to the patients who are raising their voices for change, and it is only by doing so that we have the chance to better understand ME and have the types of treatments developed and services provided that are so needed."
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Still sounding rather passive aggressive - the implication is that patients can't possibly do as good as job describing PEM as he supposedly has, and he's looking forward to eventually claiming that any such instrument is inferior to the PEM questions on his.
 
Avindra Nath:

The patient community has at times been critical of the scientists studying ME/CFS and the way the study was designed. Is it challenging to work with this community?

Nath: Some patients are angry and upset for good reason, and there's nothing bad about voicing your concerns.

As a physician you don't always learn patient care from books and textbook and literature, you really learn medicine from your patients.

Those physicians who really listen to their patients will make a huge difference in trying to advance our understanding of diseases, and provide better care than those who just take the history take notes on the computer and fill out forms.

I've really benefitted from talking with the patients about their own disease. For a little while, I didn't understand all the aspects of malaise and fatigue, and why patients were trying to differentiate that so much and what they meant when they use the word "fatigue."

So, there are all these aspects of ME/CFS that sometimes get missed in the use of the term "fatigue" in the English language because what you experience you have no expressive words to truly embody that feeling. That is an aspect you learn.
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https://www.medpagetoday.com/neurology/generalneurology/71257
 
How about this one:

In case the tweet doesn't show, it's Carolyn Wilshire saying:

"Keeping a copy of this awful tweet, which capitalises on a tragedy to criticise CFS patients' 'intense negativity'. [See tweet by Henrik Vogt, to which Carolyn is referring.] I think they may be negative towards YOU Henrik, they are lovely to me. And as a group, they are extraordinarily reslient and optimistic, despite tweets like this!"
 
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