Reporting of diagnosis

[Hutan]

The protocol was amended (with approval) to remove the requirement for participants to self-report a diagnosis based on a commonly accepted diagnostic criteria, this was due to the unexpectedly low number who were able to report the criteria used for their diagnosis.

A recent paper noted the sentence above and it got me thinking about how poor the reporting of a diagnosis is. It fits with what @Jonathan Edwards said once about diagnostic criteria probably not being very important in the diagnosis of people with ME/CFS. Of course it may be that doctors are using diagnostic criteria and not telling their patients which one they used.

I'm not so worried about which diagnostic criteria were used, or if people are diagnosed with ME/CFS when they don't exactly meet a particular criteria. But, I'd like to see more rigour and clarity about the reporting of an ME/CFS diagnosis and why the clinician made that decision. I think this could be something that charities could call for, and it is something that could be included in clinical guidelines.

e.g. Patients should be given a letter informing them that they have been diagnosed with ME/CFS and the basis of that diagnosis e.g.

• what if any criteria were used, or some other basis for making the diagnosis
• what symptoms were present and regarded as diagnostic
• how many months duration, date of onset if known
• apparent or suspected trigger, if any
• testing undertaken to identify possible differential diagnoses
• a description of the degree of debility
• a note that if symptoms change or significantly worsen, there should be a review of the diagnosis

So often that period between onset and diagnosis is a blur and it can be hard to remember what testing was done. A proper letter setting out the details would be useful in a number of ways, including helping when people with ME/CFS come to participate in trials. I never got a letter like that, neither did my children. Perhaps my GP got a letter from a specialist and I didn't request to get a copy, but I doubt it. It is the patient who needs to have the record of diagnosis most of all.

Perhaps one place to start would be ensuring ME/CFS specialist doctors are issuing letters like that. Another might be informing patients that they should ask for clarity around their diagnosis from their clinician.

 

[Utsikt]

I got a description like that when I received my diagnosis by a specialist. Although it was just a copy of the summary they had to write to my GP regardless.

 

[Kitty]

Mine's on my GP record, though as it's dated 1976 it only appears at the bottom. But people in the UK would be used to that; diagnoses are listed by date, not by priority or impact. Anything that's currently under treatment would be highlighted,

And it's not a long list, so anyone looking through it reasonably attentively would see it.

There were no tests beyond excluding the completely obvious, and because any GP taking a condition seriously would do them as a matter of course, they'd only need documenting if the results were abnormal (which of course they weren't).

 

[T&O]

I thankfully got a brief letter from a different GP and ME specialist ,after referral from an allergy specialist ,after having had everything else excluded (and existing allergies re-checked with said specialist ).
She sent a report to my GP and sent me a copy.
My life would definitely have been more difficult without it though it certainly wasnt as extensive as your (suggested?) guidelines.

 

[T&O]

Wanted to add articularly like the need for degree of debility on your guidlines Hutan.
-checked my letter from Dr Ros Vallings and she did cover all these (guess I could have simply said me too in reply to Utsikt).

 

[T&O]

(not sure how I managed to punch on a randomn emoji)

 

[Utsikt]

My diagnosis recap includes both a description of my then functioning and a FUNCAP score.

 

[Kitty]

a description of the degree of debility

A UK GP would be very unlikely to do that. It's an assessment, probably best done by an occupational therapist, and if it's to be worth anything it wouldn't be done in an 8-minute appointment.

The reality in cities now is that many appointments are with a GP you've never seen before, who knows nothing about you, and whom you may never see again unless you attend the surgery regularly for other conditions. They're not in a position to do more than the basics.

I've had four OT assessments over the years though, which for work adaptations or social security would much more useful than a letter from someone who's never met me.

 

[Hutan]

A UK GP would be very unlikely to do that. It's an assessment, probably best done by an occupational therapist, and if it's to be worth anything it wouldn't be done in an 8-minute appointment.

The reality in cities now is that many appointments are with a GP you've never seen before, who knows nothing about you, and whom you may never see again unless you attend the surgery regularly for other conditions. They're not in a position to do more than the basics.

I've had four OT assessments over the years though, which for work adaptations or social security would much more useful than a letter from someone who's never met me.

I think all of that is a very strong argument for a specialist clinic doing the diagnosis.

But, the fact remains that GPs are diagnosing people with ME/CFS (and Long Covid and, unfortunately, probably increasingly, FND). No GP should be diagnosing someone with ME/CFS in an 8 minute appointment. It should be a process over multiple appointments; they should be ruling out other possibilities, asking the person to monitor what happens after exertion etc.

If they actually did that, then I think they should be able to say in general terms the degree of severity - is the person largely bed bound, or working part-time? The NICE Guideline talked about management plans. I think that was largely hope and an entry point for the rehabilitationists. But, the GP can't make a management plan without having some idea if they should be arranging for in-home care to prevent pressure sores or writing a letter to the person's employer and facilitating disabled parking rights.

Really, if a GP feels that they know enough about ME/CFS and enough about someone's illness to diagnose them with ME/CFS, then I think they should have picked up along the way whether the person is bedbound, or still working but needing to reduce hours.

I think the barest minimum we should be expecting from a health care service making a diagnosis of ME/CFS is a letter noting that the diagnosis has been given and those other points I listed.

 

[Hutan]

There were no tests beyond excluding the completely obvious, and because any GP taking a condition seriously would do them as a matter of course, they'd only need documenting if the results were abnormal (which of course they weren't).

I think there can be quite a lot of variation between what doctors think are the 'completely obvious' tests to rule out other conditions. And it is really useful to know what has been done. Like I said, this initial months can end up a blur. You can have an idea that you had some sort of scan, but not much idea what it was.

Maybe there are different ways to record things, maybe some of the patient portals make test results a lot more accessible now.

My diagnosis recap includes both a description of my then functioning and a FUNCAP score.

That sounds really useful to track change against.

 

[EndME]

I think there can be quite a lot of variation between what doctors think are the 'completely obvious' tests to rule out other conditions. And it is really useful to know what has been done. Like I said, this initial months can end up a blur. You can have an idea that you had some sort of scan, but not much idea what it was.

Yes. For example I know that I had my CSF taken but I have no idea whether for example antibodies were examined as part of that.

I think quite an important aspect is also that just because a GP sees that a test was negative once it needn't be so in the future, especially if this occured in the beginning of the illness (2 of 19 people in the intramural study who had been diagnosed with ME/CFS had lethal diseases that had been missed up until that point). Theoretically that isn't specific to ME/CFS but there's good reasons to think some of these issues are particularly prominent in ME/CFS (with patients having "no where to go"). Ideally there was a place where people with ME/CFS could easily go to have standard tests redone, especially in the beginning of illnesses. We have lots of clinicians offering all sorts of bogus "ME/CFS tests" (mitochondrial tests, GPCR-aabs tests,...) that carry no meaning, whilst the majority of patients would probably benefit from just having "standard assessments" on a more regular basis.