Member comments wanted: Second section (Who the guideline is for) of the NICE ME/CFS guidelines draft scope

[Medfeb]

...in practice the current guideline says patients should make a fully informed choice about GET/CBT, and further treatment and support should not depend on compliance etc etc. And that GET/CBT are only evidenced for mild/moderate cases.

But mild and moderate cases of what? While its true that studies like PACE included some patients who experience PEM, GET and CBT were never evaluated in studies using definitions that require these hallmark criteria. And in PACE's reported pool of improvers, how many were just Oxford CFS = chronic fatigue. Even if those reports of improvement were valid, which they are not, I dont think there's any evidence that CBT and GET help people accurately diagnosed with ME.

So a good ME/CFS guideline could cover her needs as well. It would list other fatiguing conditions that need to be tested for, like hypothyroid, anaemia etc., and recommend consultant level investigation for those sufficiently disabled by their fatigue as to lose significant levels of functioning.

I agree that a good guideline for ME needs to include a differential diagnosis for other conditions that can cause similar symptoms - and not just fatigue. But a guideline that is written to cover both the diagnosis and management of all medically unexplained fatiguing conditions would either need to make generic recommendations that help no one and may harm or have much more detail about diagnosis and management of each of the different types of fatiguing presentations. If such a guideline were to be written, I personally think it would be a mistake to label it as an ME guideline as not everyone covered by that guideline would have ME

 

[Medfeb]

Maybe a strong, PEM-based criteria (IOM as a minimum) with a couple of lines to the effect that atypical cases may lack one or two of the secondary features; and that patients without the core feature of PEM, but for whom another diagnosis is not forthcoming, should continue to be monitored but treated immediately.

IMO, this would be preferable to guidelines that try to cover everyone. Regarding "treated immediately" - the key question will be how. I know of one clinical guideline in the US that recommends moderate exercise for patients suspected of having ME but for whom a diagnosis is not yet definitive. Could cause significant issues if it is an ME patient. A more appropriate treatment guideline would be pacing and rest.

 

[adambeyoncelowe]

IMO, this would be preferable to guidelines that try to cover everyone. Regarding "treated immediately" - the key question will be how. I know of one clinical guideline in the US that recommends moderate exercise for patients suspected of having ME but for whom a diagnosis is not yet definitive. Could cause significant issues if it is an ME patient. A more appropriate treatment guideline would be pacing and rest.

My thought was that it would tell people to pace and rest. CS made this point at our table, because there will also be clear-cut cases that haven't passed the 4-6 month 'chronic' stage that still need treatment. If people rest early, they may avoid further damage.