Improving Google’s Abysmal “CFS” pop-up

Yann04

Yann04

Senior Member (Voting Rights)
When you search me/cfs, cfs, me etc. on google there is a popup info that reads “Chronic Fatigue Syndrome”.

The only medication listed under the “Treatment” section is “Antidepressants”. The “Speciality” section reads “Primary care, Psychology, Clinical Psychiatry”.

There is a feedback section where we can send feedback. Should we all go and tell them how awful it is? Getting it changed would mean the first google result for ME looks better. May aswell recommend “ME/CFS” instead of “Chronic Fatigue Syndrome” as the primary name too.

I bet it would be much more likely to change if they get 50+ feedbacks instead of one ot two.
 
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Sure, but unfortunately it's been tried & as far as I'm aware nobody ever got a response. I remember when that box first popped up, about 9 years ago. Whether coincidentally or not it was right around the same time the IOM report was released, the same week, actually, if I recall. I spoke with Beth Mazur about it not long afterwards, and she told me a number of people wrote about it, submitting documentation, but to my knowledge nothing was ever even acknowledged. Didn't surprise me one bit. They cited Mayo Clinic so even pointing out the CDC said otherwise apparently didn't mean much.

I felt horribly cynical telling Beth I doubted there was anything us mere patients could do about it, and she was so hopeful in spirit, which I remember well, although it was my only interaction with her. It's not that I'm pessimistic, mind you. I've just become conditioned to nobody ever believing anything we say or even bothering to answer, no matter how credible the evidence presented in support of the reality of ME. That said, what's been going on on the Wikipedia ME/CFS page is tremendous even though it still doesn't read all that great. But changing the name of that page was actually a major achievement. Unless Google has a reason to care, it's a much tougher nut to crack at this point. I do wish we were at a point where we could talk about legit legal liability when it comes to these sorts of things.
 
I appreciate the answer, thanks you. I would say though that Mayo Clinic (which I believe is the only source cited) has changed their stance on ME quite drastically recently, and that the past few years have seen a very positive shift in public and medical perception of ME, so maybe there is more hope than back when the BPS was the largest party in town.
 
Do these pop-ups vary by region? When I search chronic fatigue syndrome, I get:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems.
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and it directs you to the CDC website.

Under Medication tab, there's nothing about antidepressants, just quotes NHS:

Medicine. There's no specific medicine for treating ME/CFS, but medicine can be used to relieve some of the symptoms. Over-the-counter painkillers can help ease headaches, as well as muscle and joint pain. A GP can prescribe stronger painkillers, although they should only be used on a short-term basis.
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They must! because as someone in Switzerland I get this as the main description:

“
A disease characterised by profound fatigue, sleep abnormalities, pain and other symptoms that are made worse by exertion.
Chronic fatigue syndrome occurs more commonly in women. The cause of this condition is unknown, but may include environmental or genetic factors.

“
 
Gave up on Google long ago - shifted to the non tracking Duck Duck Go - stupid name but pretty much matches Google for functionality. DDG and Bing give me NHS & MEA as 1 and 2 and Wikipedia on the right bar.
 
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