• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

MEA website question for February: Diagnosis - how long does it take? (UK only)

charles shepherd

Senior Member
Messages
2,239
MEA website survey on the time taken to obtain a diagnosis of ME/CFS from a doctor:

Why are we asking this question?

We want as many people in the UK as possible to respond to this MEA website survey on the time it takes from the onset of symptoms to get a diagnosis of ME/CFS confirmed by a doctor

Previous patient surveys have shown that many people face completely unacceptable delays in getting ME/CFS diagnosed which, in some cases, extend into years - often as a result of lack of knowledge by doctors on how and when to make a diagnosis

Failure to make a diagnosis of ME/CFS can result in bad management, no management, a failure to obtain benefits or modifications to education or work routines, and an increased risk of the condition becoming more severe and prolonged

This information will form a key item of patient evidence in our campaign to make both doctors and the general public aware of the need to make an early and accurate diagnosis of ME/CFS

The MEA campaign - which will involve information being made available to both health professionals and GPs - will be launched in May as part of ME Awareness Week

It is being funded by money raised in the Big Give Appeal at the end of last year

Vote via the home page on the MEA website:
www.meassociation.org.uk

Website question with votes so far (2 hours):

  • About how long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?
    • Less than 3 months (7%, 5 Votes)

    • 4 to 6 months (14%, 10 Votes)

    • 7 to 12 months (10%, 7 Votes)

    • 13 to 24 months (20%, 14 Votes)

    • 3 to 5 years (25%, 17 Votes)

    • 6 to 10 years (16%, 11 Votes)

    • Not certain (3%, 2 Votes)

    • Never been confirmed by a doctor (4%, 3 Votes)


      Total Voters: 69

Dr Charles Shepherd
Hon Medical Adviser, MEA
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Oh, so this is the RESULTS of the survey, right? Was going to ask if I should participate, since I am in the USA? I might have anyways :)

GG
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
@charles shepherd - you might want to put "UK only" at the front of your thread title, to restrict it appropriately. Not everyone will read your instructions! :)
 

charles shepherd

Senior Member
Messages
2,239
That still leaves a gap between 2 and 3 years.

Corrected - I'm afraid we have a lot going on at the MEA this morning

The MEA Quick Survey

  • How long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?
    • Less than 3 months (7%, 1 Votes)

    • 4 to 6 months (14%, 2 Votes)

    • 7 to 12 months (14%, 2 Votes)

    • 13 to 24 months (14%, 2 Votes)

    • 3 to 5 years (21%, 3 Votes)

    • 6 to 10 years (0%, 0 Votes)

    • Over 10 years (21%, 3 Votes)

    • Not certain (7%, 1 Votes)

    • Never confirmed by a doctor (0%, 0 Votes)


      Total Voters: 14
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Failure to make a diagnosis of ME/CFS can result in bad management, no management, a failure to obtain benefits or modifications to education or work routines, and an increased risk of the condition becoming more severe and prolonged
Sadly, simply being diagnosed is not enough to overcome this. It took me 7 years to get a diagnosis, but in 29 years of illness all I've had is bad management or no management.
 
Messages
11
im severe and bedbound and still havnt got diagnosed.. my cfs team say its anxiety... so wont give a diagnosis...
 

Aurator

Senior Member
Messages
625
Sadly, simply being diagnosed is not enough to overcome this. It took me 7 years to get a diagnosis, but in 29 years of illness all I've had is bad management or no management.
I'm in the UK and have only been ill for three years but I share your view on this.

I was offered no advice on management before or after diagnosis and have not seen a doctor re ME/CFS in over 18 months. There is nothing my GP will offer me if I do see him; he has already told me as much.

So, like most I'm just left to flounder. Meanwhile I see friends and family members getting effective treatment for all sorts of comparatively minor problems, which are taken seriously and receive their little portion of NHS resources to sort out.

No, there's not much difference for me between having a diagnosis and not having one. If I were a child with ME/CFS I'm pretty sure I wouldn't want to be diagnosed at all if I had any awareness of the increasing monopoly of children's care by people unashamedly pushing a psychiatric agenda to patients who are assumed to be just fatigued, and largely so because they are depressed or school-phobic.

The whole state of things for PwME is a mess, and a lot needs to be broken up and done away with before anything or anyone is going to mend.

BTW, why are MEA website polls always laid out on the site in such an idiosyncratic way? The top of the home page mentions the poll, provides a link to it, and when you click on the link it takes you to another page that talks in more detail about the poll. But there is no poll there. The poll turns out to be back on the home page the link sent you from, right at the bottom, but there's no signpost to it; you just have to know it's there by experience. It's very odd.
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I'm surprised at people being diagnosed before 6 months, as I thought that symptoms had to be present for at least 6 months.

BTW, I wonder whether it's appropriate for the ME Association website to have those horrible, unpredictably-moving images when so many of us find that these adversely affect our eyes and brains. I have to block off such moving images with bits of card, etc., or try to get an adblocker or NoScript to block them, or change the page to 'No Style' or just avoid the site to avoid my brain being scrambled and my eyes hurting.
 

meandthecat

Senior Member
Messages
206
Location
West country UK
At least my doctor talked to me prior to diagnosis. She gave me a strange look and asked if I wanted a diagnosis, if I had known what I know now I would have refused to go anywhere near a ME clinic, and maybe if she'd clued me in a bit.
I got diagnosed with CFS, which is just the sound of the lid closing on the bin they dumped me in ( clinical waste?)

My doc left for Australia and now they either ignore me or shout at me. Diagnosis did me no good
 
Messages
11
At least my doctor talked to me prior to diagnosis. She gave me a strange look and asked if I wanted a diagnosis, if I had known what I know now I would have refused to go anywhere near a ME clinic, and maybe if she'd clued me in a bit.
I got diagnosed with CFS, which is just the sound of the lid closing on the bin they dumped me in ( clinical waste?)

My doc left for Australia and now they either ignore me or shout at me. Diagnosis did me no good
why was the m.e clinic so bad for you???