At the beginning of this year, the ME Association asked members of the community to complete our website survey relating to diagnosis; looking at before and after the 2021 NICE Guideline on ME/CFS.
We conducted the survey to try to find out if:
- People are being diagnosed earlier
- More attention is being paid by doctors to make sure other possible causes of ME/CFS type symptoms are excluded
- People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared.
Snapshot of the Results
Out of 849 entries, 72% of diagnoses where from before the publication of the NICE Guideline and 28% after it was published.
Diagnosis
- ME/CFS 43%
- Myalgic Encephalomyelitis (ME) 25%
- Chronic Fatigue Syndrome (CFS) 28%
- Post Covid ME/CFS 3%
- Post Viral Fatigue Syndrome (PVFS) 2%
How long did you experience symptoms before visiting the GP?
- 0-4 weeks 22%
- 1 year + 33%
- 3-5 months 16%
- 6-12 months 11%
- 1-2 months 18%
Before 2021 NICE Guideline
How long did it take to get an accurate diagnosis?
- 0-3 months 9%
- 4-12 months 31%
- 1-2 years 20%
- 5-6 years 8%
- 3-4 years 12%
- 7 years + 19%
Overall were you happy with the diagnosis process? (1-5 i.e. 1=Poor 5=Excellent)
- 1 star (1/5) 39%
- 2 stars (2/5) 16%
- 3 stars (3/5) 22%
- 4 stars (4/5) 14%
- 5 stars (5/5) 9%
After 2021 NICE Guideline
How long did it take to get an accurate diagnosis?
- 0-3 months 6%
- 1-2 years 28%
- 4-12 months 34%
- 3-4 years 19%
- 5-6 years* 6%
- 7 years +* 9%
* This period may be from experiencing symptoms before the publication of the NICE Guideline and receiving a diagnosis after its publication
Overall were you happy with the diagnosis process? (1-5 i.e. 1=Poor 5=Excellent)
- 1 star (1/5) 29%
- 2 stars (2/5) 17%
- 3 stars (3/5) 23%
- 4 stars (4/5) 20%
- 5 stars (5/5) 11%
Information
- NICE Guideline: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | October 2021
- The ME Association: Diagnosing ME/CFS | April 2022