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Google health recommends a psychologist and GET to treat CFS/ME

Messages
1
Google recently added a new feature called Google health cards, which provides a summary of medical conditions.

Unfortunately, for at least the regions of Australia and the U.S. it lists CFS as a psychological condition and graded exercise therapy and CBT as treatments. I think that this information has the potential to cause significant harm and it should be changed to reflect current state of research which has identified CFS/ME to be biophysical in nature.

On the site it states that if there are errors that they can be reported via the feedback tab. I have done this and I encourage everyone to also do so. Here is the Australian link to a Google search for cfs https://www.google.com.au/search?q=...id-telstra-au&sourceid=chrome-mobile&ie=UTF-8

(I have also posted this on Reddit/cfs)
 

Snow Leopard

Hibernating
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5,902
Location
South Australia
Search for medical information on Google

You can search on Google for medical information that’s been reviewed by doctors. Learn more about:
  • Symptoms: Find out potential causes of symptoms like headaches and dizziness, and explore health conditions related to your symptoms.
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  • Medical conditions: See how long a condition lasts, whether it’s treatable, and how common it is, from "Extremely rare" to "Very common."
Note: Medical information on symptoms and treatments is available in some countries only. We provide medical information on the most frequently searched for topics, and we’ll continue to increase the number of topics we cover.
Where medical information comes from

Medical information on Google comes from high-quality websites, medical professionals, and search results.
  • First, we find and analyze health-related information from quality sites across the web.
  • Next, teams of doctors carefully review and refine the information, and licensed medical illustrators create visuals.
If you search for a symptom, you might see a section called "Health conditions related to this search," which comes from search results and our Knowledge Graph. We check these results for relevance.

In this case, the recommendation for GET/CBT comes from the Mayo clinic - if we want the information to be changed it must first be changed at the Mayo Clinic.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
In this case, the recommendation for GET/CBT comes from the Mayo clinic - if we want the information to be changed it must first be changed at the Mayo Clinic.
That is interesting, I went to Mayo somewhere between 92-1994 to get a consult on chronic pain and fatigue that I thought was mostly initiated by an apparent neck injury and unrelated surgery--and that is sort of what they recommended back then---I remember it was very disappointing and felt like waste of a trip---they emphasized a more behavioral approach and didn't do much testing. Interesting they haven't changed much since then.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
Weird, they talk about SEID be a similar but different diagnosis which it seems like maybe they give a little more respect to? I didn't know that is a thing, does it have an ICD and is it a preferrable diagnoses to get in terms of getting help or not being stereotyped as depressed? excerpt from Mayo site:

"In contrast, for a diagnosis of systemic exertion intolerance disease (SEID), you must have the following three symptoms:

  • Unexplained, persistent fatigue
  • Extreme exhaustion lasting more than 24 hours after physical or mental exercise
  • Unrefreshing sleep
And at least one of these two symptoms:

  • Cognitive impairment
  • Dizziness and lightheadedness"
---------

when I googled SEID one thing that came up was this, showing that other Medical institutions in the states acknowledge some of the science and marker for CFS--why does wiki have to go by Mayo? I am usually under-impressed by Mayo's middle of the road bland info.....leave it to the mid-west to be hold back on what they say...maybe culture reflects in all the institutions......doncha know (I can say that as a midwesterner)...........

http://scopeblog.stanford.edu/2015/...-its-blood-chemistry-signature-is-a-giveaway/
 
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Messages
25
They still haven't changed this... is there more we can do besides just submitting feedback? This could be doing real harm to people who will not get appropriate help as a result of this misinformation (while also harming all of us because the public understanding of cfs won't change while this is still what people see when they google it...). I don't really know what can be done, but maybe a letter signed by patients and specialists or something...
 
Do you know whether they have CFS listed as a psychological condition?
They don't appear to list it as a psychological disease, as far as I can see.
http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
However, despite their page below being shown as having been updated 5th October, they still recommend CBT & GET.
http://www.mayoclinic.org/diseases-...gue-syndrome/diagnosis-treatment/drc-20360510
Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.

  • Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
  • Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.
I'd be interested to see what research they are basing the "hypersensitivity to exercise" statement on.
 

Sean

Senior Member
Messages
7,378
Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.

Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.
What utter crap.
 
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searcher

Senior Member
Messages
567
Location
SF Bay Area
CBT and GET have now been removed as treatments from the google health card in the US. There are still other sections that need to be changed (particularly the specialists section), but the card now says "There is no cure or approved treatment for this condition. However, some symptoms can be treated or managed to provide relief" instead of recommending CBT and GET. CBT and GET were also removed from the support section.

I noticed that all of the changes weren't made to the Australia card so hopefully that will be updated later today.
 
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