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How long did you wait before seeing an ME/CFS specialist?

bspg

Plant Queen
Messages
547
Location
USA
I'm just curious.

I believe my onset was gradual but things significantly declined in early 2015. I saw Dr. Kaufman this year, so I consider my time waited to be ~2 years.
 

halcyon

Senior Member
Messages
2,482
Saw Dr. Chia about a year after onset (wait time for first appointment was like 6 months), then saw a Montoya PA at Stanford after about a year and a half (1 year wait time).
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I'm in the den of ignorance called the UK, so it was 4 years after after a suicide attempt that I finally squeezed a diagnosis out of my GP, and another 9 years before I saw a specialist, who didn't recommend anything I wasn't already doing.
 
Messages
2,158
Diagnosed by GP in UK 27 years ago after 6 months post viral fatigue.

The only time I've ever seen any consultant was after 14 years of relatively mild illness I finally had to give up work and was sent to see a semi-retired rheumatologist paid for privately by my employer for a report for my ill health retirement pension. He just confirmed the diagnosis on case history and symptoms, and didn't suggest any treatments.

The local 'ME specialist service' had a GP to assess patients who, when I saw him about 6 years ago, was completely clueless. At least at that stage they were recommending pacing, not CBT or GET at that clinic - I've heard it's gone off the rails since.

I'm not well enough to travel anywhere else to see a specialist.

So I guess my answer to your question is 27 years and still waiting!
 
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Countrygirl

Senior Member
Messages
5,431
Location
UK
For me it 15 years after becoming ill, four years after becoming severe. I was 'rescued' by a friend who took me out of the county to a doctor a couple of hundred miles away who admitted me into a nursing home. where I was diagnosed. I was told it was a chronic Coxsackie B infection and I was diagnosed according to the Ramsey guidelines. At that time, a muscle biopsy was taken from the thigh (no anaesthetic given then ) to confirm diagnosis.

47 years after becoming ill, I am still waiting for local doctors to recognise the reality of ME.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I haven't yet bothered to try to see an ME/CFS specialist, because as far as I know, there's no point. What good is a piece of paper officially stating that a doctor has judged that I probably have the disorder? I'm waiting for a treatment that requires an official clinical diagnosis.
 

Invisible Woman

Senior Member
Messages
1,267
I haven't yet bothered to try to see an ME/CFS specialist, because as far as I know, there's no point. What good is a piece of paper officially stating that a doctor has judged that I probably have the disorder? I'm waiting for a treatment that requires an official clinical diagnosis.

I do see your point @Wishful. The trouble is that if you need support from the state by way of benefits or social services then you need a diagnosis and input from your GP or specialist.

From that point of view many patients are doubly damned.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
It was about 4 years after my sudden onset of illness before I saw Jay Goldstein in 1996 or '97 (don't recall very well). I waited until the illness was interfering with my ability to complete medical school. I heard about Dr. Goldstein through a friend who had been ill since the mid-70s. After Goldstein "retired" in 2001, I did not see another specific ME/CFS expert until 2015 when I began to see Dr. Kaufman. In the meantime I saw physicians simply to be maintained on my pain management regimen. Starting in 2011, I began to pursue the Lyme/Bartonella possibility. Dr. Kaufman covers both the ME and the infectious sides of this illness.
 

Revel

Senior Member
Messages
641
It took 40 years post-onset for a GP to grudgingly confirm that I had ME. I needed an "official" diagnosis at this stage because I was no longer able to work. That was over 4 years ago and I haven't been referred on elsewhere. So, coming up for 45 years and still waiting . . . patience is beginning to wear thin :meh:.
 
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msf

Senior Member
Messages
3,650
I saw KDM when I had been ill for 5 months, so before I could be officially diagnosed with ME, but since my father also had it I thought I would take the chance, and unfortunately I wasn´t being a hypochondriac.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
24 years, because it was mild.
Modafanil, ironically a drug used for daytime wakefulness, was the very quick catalyst (1 day) to make it moderate & get the diagnosis last year.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
31 years and counting. I live in a rural area a long way from any specialists. I cannot afford all of the expenses that would be involved. I am also single, so cannot do any treatment that would render me unable to care for myself. Unfortunately, many of the ME/CFS treatments make you worse before they make you better.
 

edawg81

Senior Member
Messages
142
Location
Upstate, NY
8 weeks after my acute onset that pushed me from very mild to very moderate (thanks facebook group ppl for urging me to see an ME specialist!). I was very mild for 10 years before but didnt know what was wrong and neither did any doctor.