Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs

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News from Doctors with ME
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https://doctorswith.me/nice-gp-upda...uBBhnXfi_TnrqJO4i9FsC8X9ZgOtRAkgf6U0xB6MFV-gU

Isn't this stretching the truth somewhat? ...

No matter what we might think, from a clinical perspective surely it is still a diagnosis of exclusion? Until we have a positive biomarker, then it cannot be a positive diagnosis?

If I'm right about the above, then doesn't this advisory from DwME discredit their competence, and the validity of their message? Just reinforcing the notion of it being opinion based, without real scientific underpinning?

More harm than good?

 

Perhaps, like any other, it is best viewed as a hybrid disease (EDIT I meant to say "diagnosis"). Other potential causes have to be first eliminated before a positive diagnosis can be made. It all comes down to words.

 

Yes, but my point is that if we have medically qualified advocates making claims that do not stand up to scientific scrutiny, then they are doing us more harm than good surely.

 

Yes, you are right, and also it is still a diagnosis of exclusion from NICE’s point of view, as far as I can see. (my bolding below):

the NICE guidelines state:

1.2.2 Suspect ME/CFS if:

• the person has had all of the persistent symptoms in box 2 for a minimum of 6 weeks in adults and 4 weeks in children and young people and
  
  
• the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels and
  
  
• symptoms are not explained by another condition

 

DwME seem a bit of a loose cannon to me.

 

It depends what is understood by "diagnosis of exclusion". Many people don't seem to realize there are (positive) diagnostic criteria. They have the concept of a so-called-"wastebasket diagnosis" like "something is supposedly wrong but tests were clear so let's diagnose them with ME/CFS/etc". That is often what is understood by the phrase "diagnosis of exclusion", and is inaccurate. People must be educated on the how to make a positive diagnosis.

Edit: this is not a comment on DwME

 

I wonder if the DwME position just comes from experience of treating other illnesses which have no objective biomarker, but which doctors consider amenable to positive diagnosis based on core signs and symptoms? The process will involve an exclusion exercise, but that applies to practically everything; there's also a margin for error, but ditto.

 

But wouldn't this then be the same "clinical experience" argument that the NICE Guideline detractors were promoting so hard as reasons why they believed the new guideline to be so wrong. We can't have it both ways. Clinical experience might be a component of the evidence, but no way can it count as all the necessary evidence - just a potentially biased subset of the evidence. So would be shooting ourselves in the foot to say that clinical experience did not cut it for the guideline detractors, but it's OK in this case because it agrees with our opinions.

 

This is not the same as a positive diagnosis is it? Such criteria need to be unassailably unique to the illness, and unassailably identifiable without ambiguity. I don't think we are there yet. If we were, then pwME would be in a far far better place by now.

 

I think Doctors with ME have this OK. When I came to understand that there is a specific syndrome of ME with PEM and unrefreshing sleep I was realising that ME/CFS is not purely a diagnosis of exclusion - which is the point that I think needs to be made for most doctors. It is not long term fatigue of any old sort with no reason found.

Lots of conditions are diagnosed with the caveat that you need to exclude certain other things. Rheumatoid arthritis should be diagnosed as long as you are sure it is not haemachromatosis or Whipple's disease.

 

You'd also be in trouble without it, and have to leave a lot of people with no diagnosis at all.

There are some really common conditions that are practically impossible to measure accurately, and often rely on response to treatment as part of the diagnostic process—which, on a rigid interpretation, is even more unsatisfactory than an experienced clinician's reading of signs and symptoms, because it depends on an inexperienced patient's interpretation of whether or not a medicine works.

How would you diagnose depression and mild asthma if objective measurements were required? I'm not sure you could, which might mean millions of people missing out on treatments that would help a significant proportion of them live a much more normal life. That probably goes for quite a list of other conditions too.

I'd argue—and I know some folk will disagree—that at least after the 12-month mark, ME is fairly easy to diagnose if you know what you're looking for. The persistence of the response to activity over that length of time is unusual enough to be characteristic, and the only real debate is at what point you start calling it ME rather than a post-viral syndrome. Yes of course there's room for error, especially if the patient has a condition that's quite rare and poorly-defined, but the majority of the time the clinical picture will be clear enough to give a positive diagnosis.

 

I think this is a very helpful summary for GPs.

I have been looking for something succinct to pass on to my GP, who was grateful when I asked if she was interested in hearing about the new ME Guidelines. (I actually got an in-person appointment in mid Dec.)

Reading through some summaries, though accurate, made me realise once again how little progress there has been.
I know that removal of GET and CBT as a curative therapy is HUGE, for numerous reasons, but some of the content on physical activity and CBT is still confusing, so I am pleased to see this.

 

OK, in that case I am very happy to be wrong, and withdraw my concerns on this re DwME. It's very good that their message on this is beneficial.

 

I just read it and I think it's a great article. Very informative and inviting. I think Doctors with ME did a very good job there.*

The bit about ME being a positive diagnosis and not a diagnosis of exclusion is not in the PDF brochure attached to the article, and I actually think it might even be a bit poorer for it. Because it emphasises that you can't just do a limited series of general tests on your patient and then dump them in a "CFS/ME" wastepaper basket because one of their symptoms is "fatigue". You have to have the four associated symptoms present, and if the associated symptoms are completely absent you might want to guess again what you're looking at.

It is not only a helpful set of criteria for GPs, it cuts off a dismissive shortcut used by bad GP's that don't want to deal with "difficult" or even "hypochondriac" patients. And just think of the individuals who will be helped by this if their problem is for example a deficiency of some sorts which causes fatigue. They will be found much faster if a GP can cross off ME because the patient doesn't fit the description and keeps looking. To us that's an open door, but many GP's have no idea, and it's vital, and helpful, that they understand this.


I understand the point you were trying to make @Barry, but I see no problem in using these symptoms as positive diagnosis markers as the combination of PEM with cognitive, neurological and autonomic nerve system disfunctions have been the hallmark symptoms of ME since the 80s and before. Especially as the NICE guidelines give an elaborate set of things that can be tested for as differential or co-existing conditions.


* Edited to add: really, it should be a brochure.

 

pdf
https://doctorswith.me/wp-content/uploads/NICE-GP-QA.pdf

only 4 pages, much, much better than the MEAs 28 page 'summary'.

 

I'd prefer the article being made into a brochure though, it's more elaborate in content and up to date.

Like:

 

I haven't read the DWME broucher yet and only came across the MEAs ‘summary’ last night. The one thing I found helpful in the summary is the part about Managing symptoms. In the NICE guideline not only is it seriously lacking, it is also written haphazardly without clarity. You would think people with ME do not share a lot of symptoms. However, when you look at the Long COVID guideline there are so many symptoms listed against a pathology that we also experience. I’m not aware of any large trials that confirm the known pathology of Long COVID, so I’m not sure how it can’t be determined for ME but is easily done for LC.

The summary clarifies for GP’s to refer to the NICE guidelines to mange other symptoms ME/CFS patients present with. I decided to look up one of my own and searched numbness and tingling and this is what came up.

https://www.nice.org.uk/guidance/ng...nition-and-referral-pdf-66141663923653#page45

In the referral recommendation is also says

I’ve included the information about functional neurological disorders because the general consensus in neurology is that ME is a functional problem. In my own experience, even when referred to secondary care neurology as per the guidelines, all your symptoms are then dismissed as part of your functional disorder. It would take a specialist to liaise with Neurology in explaining the condition fluctuates yet is still physical and needs treating. According to my GP that’s out her remit, as she’s not a ME specialist. However, the guideline has emphasised general practice symptom management.

 

• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
• Post Exertional Malaise.
• Unrefreshing sleep or sleep disturbance.
• Cognitive difficulties or ‘brain fog’.

I did not meet the above criteria in 1992 when I was dx with PVFS/CFS two years after relapsing.

My dx was based on history of remitting/relapsing symptoms and the experience/ knowledge of an M.E clinician with over 20 years experience.

 

I think DwME are fine to state that it's a positive diagnosis (as opposed to a wastebasket diagnosis). I think earlier drafts of the GL used similar wording, if I'm remembering correctly. That was partly why there weren't exclusionary tests until the final draft (though that doesn't mean it has become a wastebasket diagnosis in the last draft either).