Anybody seen how Medscape is burying accurate ME/CFS info?

[wabi-sabi]

Hi Everybody,

So I have an upcoming appointment with my doctor and I was trying to find some good info to bring to her. I knew there was an article about

New Findings Elucidate Potentially Treatable Aspects of ME/CFS

https://www.medscape.com/viewarticle/911666

but everytime I used Medscape's search engine mainly this stuff showed up

Journal to Withdraw Chronic Fatigue Review Amid Patient Activist Complaints
whether CFS has physical and psychological elements.
News, Oct 18, 2018

Online Activists Are Silencing Us, Scientists Say
that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies, the Oxford University professor is subjected to almost daily, often anonymous, intimidation.
News, Mar 14, 2019

I would never have found the real science article about our own ME/CFS researchers if I didn't already know it was there. If I just told my doctor to look at Medscape. what would she have found?! All the bad stuff. At risk of sounding paranoid, it sure looks like Medscape is burying the accurate articles on ME/CFS. Does anyone have the energy to take on this challenge? Printing out the article for my doctor is about all that I feel up to right now.

 

[Judee]

What they are doing is bad. I remember someone saying they wrote to them a bunch of times a while back and got them to change something but I can't remember who it was.

I don't think I have the energy or know-how to do this but maybe that person will see your post.

 

[JES]

It looks like it's just their search engine that is wonky. If I search with the keyword "New Findings Elucidate", I do get OP's article listed. However, if I search for "Treatable Aspects of ME/CFS" or with the full headline, I don't get any hits.

The BPS articles are quite highly listed when searching with keywords "ME/CFS" or "CFS", however, it may simply be because they are among the few ones written in 2019 and search engines typically include date of the article as one factor in prioritizing the order.

 

[valentinelynx]

but everytime I used Medscape's search engine mainly this stuff showed up

Hmm. I just entered the term "ME/CFS" into the search field on Medscape and below is the list I got. It doesn't seem to have the bias you found...


Biomarker May Be a Diagnostic Test for ME/CFS
The investigational test, based on differential responses to hyperosmotic stress, may serve as a low-cost diagnostic for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
News, Apr 29, 2019
Rituximab Fails to Improve Symptoms in ME/CFS
New findings in treating myalgic encephalomyselitis/chronic fatigue syndrome (ME/CFS) contradict previous observations and preliminary trial results; illness heterogeneity was cited as a research
News, Apr 2, 2019

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) Clinician Summit 2018
Read clinically focused news coverage of key developments from ME/CFS 2018
Perspectives, News, Mar 14, 2018
New Findings Elucidate Potentially Treatable Aspects of ME/CFS
Circulatory defects and orthostatic intolerance are common and potentially treatable manifestations of the illness.
News, Apr 10, 2019
'Milestone' Meeting Highlights NIH Efforts to Combat ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome has become the focus of serious attention by the NIH, and funded research is showing results, but the funding level still does not match the need.
News, Apr 17, 2019
CDC Launches New ME/CFS Guidance for Clinicians
New web content addresses diagnosis, management, and additional clinical considerations for managing patients with mylagic encephalomyelitis/chronic fatigue syndrome.
News, Jul 13, 2018
Chronic Fatigue Syndrome: It's Real, and We Can Do Better
ME/CSF is a serious biologic illness with no specific treatment. But there are ways to improve quality of life for these patients.
Perspectives, Feb 25, 2019
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Information (2018)
2018 guidelines by the CDC on the evaluation and management of myalgic encephalomyelitis / chronic fatigue syndrome.
Practice Guideline, Aug 9, 2018
New Chronic Fatigue Syndrome Biomarkers in the Pipeline
Patients with chronic fatigue syndrome have variations in 17 circulating cytokine levels, and their concentrations in the blood correlate with disease severity, a study has found.
News, Jul 31, 2017
Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome'
Many patients who meet clinical criteria for myalgic encephalomyelitis/chronic fatigue syndrome could be suffering from the recently described entity mast cell activation syndrome.
News, Mar 13, 2018
'Chronic Fatigue Syndrome' Takes Down Doctors, Too
Four physicians whose medical careers were derailed by the complex and poorly understood condition urge their colleagues to take it seriously.
Perspectives, Jun 28, 2018
Low-dose Naltrexone Explored as Option for Chronic Pain
A panel of clinicians who treat myalgic encephalomyelitis/chronic fatigue syndrome selected low-dose naltrexone as one of their top choices of drugs with potential benefit in that population.
News, Mar 16, 2018
Much Can Be Done to Ease 'Chronic Fatigue Syndrome' Symptoms
In a 2-day summit, clinician experts met to share best practices and to begin developing assessment and treatment guidance for primary care providers and specialists.
News, Mar 12, 2018
A Revised Approach for Chronic Fatigue Syndrome
Dr Arefa Cassoobhoy highlights a new and revised approach for managing chronic fatigue syndrome.
Perspectives, Apr 9, 2018
Chronic Fatigue Syndrome Linked to Low T3 Syndrome
Findings suggest that people with the condition known as chronic fatigue syndrome may be in a hypometabolic state.

 

[wabi-sabi]

@JES yes, looks like their search engine is wonky and my brain can't quite figure it out. Mainly, I'm anxious over my upcoming appointment since I want to talk about orthostatic intolerance and am trying to marshal my arguments. I need some help with it, but at the same time I'm afraid to take medication since I react so strongly and badly to medication.

 

[me/cfs 27931]

@JES yes, looks like their search engine is wonky

Could possibly be a search engine filter bubble.

Just like with Google, different users can get different search results based on their past activity (and other personal data). Users typically get search results that confirm their prior beliefs, while info that doesn't match prior beliefs is hidden.

The filter bubble and its effect on online personal health information
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4937233/

 

[BeADocToGoTo1]

Keep in mind that SEO (search engine optimization) is an art in and of itself. You may have a website show in the search engine one day, and be completely gone the next day. There are bots and algorithms that crawl through websites and determine how high to list a result. This changes constantly. Which IP address you used to search can even impact the results. And of course, those sites that pay will show up higher. I doubt it is malicious.

 

[Foxglove]

Is it reasonable to try suggesting articles by Miriam Tucker? I don't know how many of the good ones are not by her, but she writes a lot of good ones.