CDC/Medscape survey: “ME/CFS: Knowledge, Attitudes and Beliefs in the U.S. General Public.”

March 28, 2022

Dr Charles Shepherd comments

The very disappointing results from this large survey into the problems faced by people with ME/CFS in obtaining an accurate and early diagnosis followed by good information and guidance on management will come as no surprise

What may surprise some people is that it was carried out in America – where many health professionals are just as badly informed about ME/CFS as here in the UK

There is no real equivalent to the NICE guideline on ME/CFS in the USA

And a serious lack of clinicians who specialise in ME/CFS and take a biomedical approach to management

The research was carried out by the CDC (Centres for Disease Control and Prevention) and Medscape (a medical website)

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Dr Charles Shepherd


  • Most (69%) of survey respondents said they felt slightly or not at all knowledgeable about ME/CFS.
  • About one-half of respondents with ME/CFS symptoms said their symptoms have a significant impact on their quality of life. A whopping 90% said their symptoms caused them to give up social, recreational, or work activities, but only about one-third have spoken to a health care professional about it. They “don't think their health care professional will take them seriously” was a common reason for not seeking medical care.
  • About 6 in 10 respondents who did talk to a health care professional about their ME/CFS symptoms felt their HCP did not take them seriously:
  • 64% said their health care professional told them to “get some rest.”
  • 62% said the doctor told them their symptoms were due to a “mental issue.”
  • 30% said they prefer to manage their symptoms on their own before seeing a health care professional.

Link to article discussing this survey

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