Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME)

[Dolphin]

Two participants discussed their reluctance to be referred to specialist services because of misunderstandings and stigma associated with CFS/ME:

“When my GP said I’d like to refer you I just laughed…and said, it’s terrible but I did, I said oh isn’t that for people who don’t like work and she really like growled at me in a nice way and said I think you’ve got a lot to learn” [P7]

I sometimes forget that something like this could occur due to some attitudes in society.

 

[Dolphin]

Diagnosis and validation
Many participants had their CFS/ME diagnosis confirmed when they were assessed by the specialist services. Although some participants described feeling “relieved” that diagnosis provided “an answer” and “ruled out”other conditions, it was a difficult time for the majority.

The readers aren't told that in an awful lot of situations now patients aren't assessed by a doctor in the clinic. It is hard to believe that some patients would not be frustrated by this or even if they did see a doctor, it is often for just one appointment and the doctor can't request tests themselves.

 

[Dolphin]

Participants recalled feeling “angry”, “distressed”, “frustrated”, and “fearful”, and that the diagnosis represented “a life sentence”. The specialist service played a crucial role in supporting patients through this difficult period by providing information and by validating participants’ experiences:

“it was really nice to feel that um I was being treated by expert professionals who understood the condition and were sympathetic to it and were really committed to helping which was err you know a completely different experience to my GP to be honest” [P2]

So what sort of information are they saying the services provide on prognosis? This paper itself on the one hand talks about services aiming for recovery and on the other hand saying it is a long-term condition.

Also I imagine a lot of patients at some stage go on to feel that the professionals "don't understand the condition" and are only committed to help in very specific ways.

 

[Sean]

and being “open” and “honest” about the limitations of treatment

I look forward to that.

 

[MEMum]

Have just seen this:
https://www.actionforme.org.uk/news...st-services-uk-healthcare-for-people-with-me/

I have responded on their FB page that I didn't think there were any helpful specialist services for people with ME.
Except for possibly in the NE.

 

[slysaint]

Have just seen this:
https://www.actionforme.org.uk/news...st-services-uk-healthcare-for-people-with-me/

I have responded on their FB page that I didn't think there were any helpful specialist services for people with ME.
Except for possibly in the NE.

"
Based on these findings, Action for M.E. will take action to address the ignorance, injustice and neglect experienced by patients with M.E. We will:

• work with policy-makers and NHS organisations to develop and implement a method to collect data on M.E. prevalence and clinical pathways
• work with health professionals, other M.E. organisations and people affected by M.E. to explore how we can develop a national blueprint for appropriate, patient-led specialist M.E. services that meet the needs of people with M.E. "

I have a sick feeling of deja vu here (from fifteen[?] years ago).
All sounds good until you read it again; end of the day all they plan to do is to 'explore how to develop a national blueprint'. Bit pointless as long as the NICE guidelines stay the same and the ever increasing pushing of ME into the 'MUS group' continues.

 

[RogerBlack]

I don't recall anything like that. I searched for the string "excl" and this is the only thing that came up:

I believe I was thinking of (of the phone interview exclusion) "not diagnosed with CFS/ME as a primary diagnosis."

Which raises the issue of if they're rediagnosing some people with depression or ...