Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

Mary

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@Learner1 - you make a very good point that, hard as it may be to believe, there are real people in these institutions and some of them might even care - really worth remembering.

No, no word from Mayo. I checked their website probably 2 weeks ago and no changes made either. I'm going to follow up soon with an e-mail to the person who contacted me and try to get an update.
 

Learner1

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@Learner1 - you make a very good point that, hard as it may be to believe, there are real people in these institutions and some of them might even care - really worth remembering.

No, no word from Mayo. I checked their website probably 2 weeks ago and no changes made either. I'm going to follow up soon with an e-mail to the person who contacted me and try to get an update.
Great! We don't want your good efforts to go to waste...:)

Is there an ombudsmen or a Community Relations office? Or the head of patient care? Someone there must care...

I'm hoping that the new CDC info will help me at this week's disability hearing... Its important to have authoritative info we can draw upon in fighting our battles, so every little bit helps!!

Good luck with you enquiry!:hug:
 

Mary

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Is there an ombudsmen or a Community Relations office? Or the head of patient care? Someone there must care...
There's something called something to do with "patient experience". I forget the exact title. I had sent the letter to all three Mayo Clinic locations (Minnesota, Florida and Arizona) hoping to get anyone's attention. I actually got a response from all 3 locations, the best being the e-mail from Minnesota. I think Florida sent me a letter saying that my letter would be sent to office of patient experience, whatever it was called and that was all I heard from them.

Anyways, since I have a live person who apparently is actually involved with the website, I will follow up with them.

That's great the new CDC info is available for your upcoming disability hearing! I hope it goes well :thumbsup:
 

Mary

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Well, the Mayo Clinic has blown me away again. Two days ago I e-mailed the editor who had initially responded to me to get an update and got an automated reply - he/she was on medical leave and to call so and so if I needed help.

So this morning I geared myself up to call so and so, but when I went into my e-mail to get the name and number, there was a reply from someone else at Mayo (!) to my e-mail of 2 days ago. This person said she is the editor working on this, they have a meeting scheduled about their "article" (website I guess) about ME/CFS and will be looking at the CDC updates. I replied and thanked her and again urged her to look at the IOM 2015 report as well as the CDC info. And asked to be kept informed.

I can't believe I got another response, and so quickly. I'm not used to this! :nerd:

So perhaps the CDC's change of heart may have significant repercussions! :)
 
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Another woeful article on adolescents and ME on the Mayo Clinic site aaaggghhhh. The constant referral to behaviour issues. It is both medically and scientifically embarrassing that they put such rubbish on this site. As a parent I would be grateful if they would at least update or correct this nonsense. I believe someone else on PR has been liaising with them? Frustrated parent and sick of the terrible nonsense written. @Mary

https://www.facebook.com/groups/413161049055633/permalink/476451266059944/
 
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Well, the Mayo Clinic has blown me away again. Two days ago I e-

So this morning I geared myself up to call so and so, but when I went into my e-mail to get the name and number, there was a reply from someone else at Mayo (!) to my e-mail of 2 days ago. This person said she is the editor
I can't believe I got another response, and so quickly. I'm not used to this!
Fantastic work. Much appreciated.
I go to the Mayo Clinic mainly for my Crohn's Disease. The doctors & facilities are great. They diagnosed my Crohn's after four doctors misdiagnosed me. Two doctors (neurologist & sleep doctor) also diagnosed my ME & provided some helpful info including that it was not related to Fibromyalgia. I was then directed to take a 2-day course at the Mayo in managing ME. I spoke with the nurse in charge of it and found it was an expanded course I had previously taken for treating Fibromyalgia. It is similar to the website article. Was told that because my ME was more advanced, the course would not be helpful so didn't take it.
So problem #1 is some doctors & groups seem to lump Fibromyalgia, CFS & ME together. or at least for treatment. I have had local doctors & hospitals do the same. Common issue we all fight at times.

The issue with the articles is that they are almost exclusively written & edited by full-time doctors, nurses & caseworkers. Staff is supposed to either publish, teach or be involved in research yearly or regularly. Naturally the patients come first.

This creates two issues I have found. First is some (not most) do not put real effort in what they publish as its extra time and work for them. Have seen articles from Mayo doctors that provide no real data, info or even are outdated as if they stole from an old textbook. Now most Mayo doctors really put a lot of extra effort but they are human like everyone else. My GI doctor is leading research on a new way of diagnosing colorectal cancer that is noninvasive which is showing promise. I believe most that see your letter will want to correct and update the article and even seek to apply it to the care given at the Mayo Clinic. Admittedly, your letter will have a bigger impact because of the depth of the info you gave.

The second part is they can't just get together or stop to update articles as new information is discovered and may not even be aware of it. Their patients come first. I have had to make appointments as long as 3 months in advance. So I would say getting the article, website or additional materials updated will require time & patience.
I hope it can then lead to an update in their treatments for ME and possibly research that the Mayo Clinic is known for. Thanks again as your work can be a starting point to better things for all of us.
 
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Learner1

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I wrote to Healthwise to get their awful content changed, including the current CDC and IOM info and a link to the YouTube from the OMF Symposium as well as my doctors prescribing IVIG, antivirals/antibiotics, and nutritional supplements, particularly mitochondrial cocktail nutrients.

I heartily encourage you to write to Contentrequest@Healthwise.org if you disagree with their decision to do nothing at this time and to continue supporting CBT/GET and strongly deterring patients from nutritional supplements.

They are interested in hearing from patients...

Firstly- thank you, again, for sharing your concerns about our Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) topic. Your feedback helps us learn how our content is received by people suffering from this illness, and how we might improve our information about ME/CFS. Our internal medical experts were interested in your feedback, and they reviewed your detailed input. ME/CFS is an incredibly difficult and often misunderstood disease. We do our best to provide information based on the most up-to-date research and clinical information, which as you know, is constantly evolving, thanks to ongoing research efforts.

At Healthwise, we review medical research and guidelines from reputable medical and government organizations as we create and maintain our health information. Our content is developed collaboratively by medical writers and doctors who use current evidence-based medicine guidelines and practices. Healthwise has a standard of providing information that is supported by scientific research.

Because our content is currently consistent with published information from sources like the Institute of Medicine (IOM) and the Center for Disease Control (CDC), we do not have any current plans to make revisions, but have taken your input into consideration. Our medical experts researched your concerns and provided some specific responses.

While not all patients with ME/CFS will experience all possible symptoms, our topic provides an objective list of the most common symptoms of ME/CFS, like feelings of exhaustion, problems sleeping, pain and difficulty concentrating.

Our content includes strategies and treatments to manage these symptoms, including traditional medicine, naturopathic options and experimental treatments. We acknowledge that common symptoms include depression, however, this is not intended to suggest that the illness is psychiatric in etiology. We currently follow updated IOM diagnostic criteria and include information that other diagnoses must be ruled out before a diagnosis is made. We provide a list of potential exams and tests, including tests of the immune system.

We recognize there is controversy about the effectiveness of therapies recommended by the PACE trial. However, some experts continue to recommend cognitive behavioral therapy and/or graded exercise for people with mild or moderate ME/CFS, if they chose and where these interventions provide benefit.

Our medical experts are closely following published guidelines and studies to stay current on these recommendations. We are also developing additional health information on other strategies, like pacing activities and staying within one’s energy envelope.

For individuals who suffer with ME/CFS there is a spectrum of illness. Our topics are written for individuals who are newly diagnosed and want the basics of information, and are based on established evidence-based practice guidelines and nationally recognized authorities. While there is a great deal of emerging research and treatments, many are investigational and not yet fully validated.

We truly appreciate your time and detailed feedback on our ME/CFS health information. We will continue to listen to patients like yourself, and follow published research closely to maintain the relevancy and accuracy of this information.
 

Webdog

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I wrote to Healthwise to get their awful content changed, including the current CDC and IOM info and a link to the YouTube from the OMF Symposium as well as my doctors prescribing IVIG, antivirals/antibiotics, and nutritional supplements, particularly mitochondrial cocktail nutrients.

I heartily encourage you to write to Contentrequest@Healthwise.org if you disagree with their decision to do nothing at this time and to continue supporting CBT/GET and strongly deterring patients from nutritional supplements.

They are interested in hearing from patients...
I have contacted Healthwise four times over the past year via their website. I have never once received a response.

http://www.healthwise.org/contactus.aspx

Am I likely to get a response if I use the email address you provided?

Edit: Sorry that sounded terse. Just want to make sure it's not another effort that goes into a black hole.
 
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Learner1

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I have contacted Healthwise four times over the past year via their website. I have never once received a response.

http://www.healthwise.org/contactus.aspx

Am I likely to get a response if I use the email address you provided?

Edit: Sorry that sounded terse. Just want to make sure it's not another effort that goes into a black hole.
Yes, you should. The quote I gave was from a real person who is a "content specialist" at Healthwise who responded personally to what I had written.

Please give them input, this needs to change!!
 

Webdog

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Yes, you should. The quote I gave was from a real person who is a "content specialist" at Healthwise who responded personally to what I had written.

Please give them input, this needs to change!!
Thank you. I can't tell you how much I appreciate this. :)

Not just Mayo, but also Kaiser Permanente pulls much of their "Health Encyclopedia" web data from Healthwise.

I have a formal complaint in with Kaiser Permanente regarding their ME/CFS web info (GET/CBT), but it would be an easier fight if it could be changed upstream at Healthwise.