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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Updating early onset ME/CFS list

Denise

Senior Member
Messages
1,095
I am again updating the early onset ME/CFS list.

Please spread the word

If you came down with ME/CFS before age 23, contact speakupaboutme@gmail.com.

Provide
name (let me know if I should only use your first name or a nickname that you provide),
age at onset,
age at diagnosis,
current age,
location (country is sufficient).

(Note - In providing this information, you grant permission for me to use this list as I see fit. Example showing the CDC, NIH, DHHS, CFSAC, media, etc. how many patients with early onset ME/CFS there are.)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi... can we add family members to this list if they are without diagnoses still due to ignorant doctors?

I have a cousin on disability who was 17 years when she got this illness and she has all the same symptoms as I do, but hasnt got an actual name for her illness as her doctors dont believe in ME/CFS and she's taken her doctors stance and hence thinks ME/CFS psychological illness, so thinks she cant have it either as they believe her illness whatever it is, is "real".

There's probably many out there in which it is known that they have this illness and completely disabled by it but they are remaining undiagnosed, due to their trust in doctors who dont have a clue about our illness.

Maybe this age group is less likely to get a diagnoses due to their age of which the illness occurs.