UpToDate: Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome, 2022, Jenkins

[Tom Kindlon]

https://www.uptodate.com/contents/p...ic-encephalomyelitis-chronic-fatigue-syndrome

Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome

Outline

• INTRODUCTION
• BACKGROUND
• MY INITIAL SYMPTOMS
  • Fatigue
  • Muscle pain
  • Poor exercise tolerance
  • Headaches and cognitive difficulties
• SEARCHING FOR A DIAGNOSIS
  • My journey
  • Communicating with health professionals
• LIVING WITH MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
• MESSAGE FOR OTHERS
• RESOURCES
• REFERENCES

AUTHOR:
Wilhelmina D Jenkins
SECTION EDITOR:
Anthony L Komaroff, MD
DEPUTY EDITORS:
Jennifer Mitty, MD, MPH
Karen Law, MD
Contributor Disclosures

All topics are updated as new evidence becomes available and our peer review process is complete.
Literature review current through: Aug 2023.
This topic last updated: Jul 08, 2022.

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I thought this was very good and it’s great that it's up on an independent site. Thanks @Wilhelmina Jenkins

 

[mango]

Looking forward to reading this!

 

[Trish]

We have a thread from 2018 when a member tried unsuccessfully to get UpToDate to remove their recommendation of GET/CBT for ME/CFS.
UpToDate ME/CFS information
If you have an information about it's section on ME/CFS now, please post it on that thread.

 

[Wilhelmina Jenkins]

Thanks, Tom!

 

[Trish]

Thank you @Wilhelmina Jenkins for sharing your story in this way. The more clinicians see coherently expressed and honest accounts of patients' experience the better, and yours does this very well.

 

[Denise]

This is one of the articles I give to healthcare practitioners on a regular basis.
They get a lot out of it!
Thank you so much @Wilhelmina Jenkins !!

 

[Tom Kindlon]

This is one of the articles I give to healthcare practitioners on a regular basis.
They get a lot out of it!
Thank you so much @Wilhelmina Jenkins !!

I put it aside recently to read. I didn’t keep a record of the source but think now it is was from your mailing list for caregivers.

 

[Hutan]

I found this to be a great patient account, useful for new patients and for health care professionals to read. It conveys the awfulness of the illness, while not eliminating hope. I'm sorry that you have been through so much @Wilhelmina Jenkins; I hope you, and all of us, get some answers soon.

I like the proposal of 'cognitive disruption' as a replacement for the term 'brain fog'. Your account reminded me of my early years, when I was trying to deliver quantitative cognitive work and could not manage it, despite trying so hard and despite it being something I could normally achieve easily. And feeling desperate about letting people down in a field where negative conclusions would be drawn not just about me, but also about the capacity of women in general.

MESSAGE FOR OTHERS
If I could speak to every newly diagnosed person, the first thing that I would say to them is that this is not your fault. This is a life-crushing disease, but you did not cause it. There are good researchers working hard to understand this poorly understood disease, and as long as they are doing the work, there is hope.

Be very gentle with yourself. Be as kind to yourself as you would be to your closest friends if something this devastating happened to them. And remember that your life has value, no matter how constrained it may be. Try your absolute best to hold on.

 

[Wilhelmina Jenkins]

Thank you all for your kind words!