Goodfellow Medcases CPD - Managing CFS/ME in general practice: new ideas, 2019, Mount and Vallings

There are some good things about this case study as well as some bad things.

From the introduction:
This MedCase describes a typical case of CFS/ME encountered in general practice with a focus on management ideas around caring for these complex patients.
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I don't like people with ME/CFS being termed 'complex patients'. I guess if you want to say the syndrome is complex, ok, but the patient is just a person. Complex usually means 'difficult'.

This is the first sentence of the case study:
Miss C is a 17 year old girl who comes to see you with a two-day history of worsening tiredness, pelvic pain and difficulty sleeping.
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A two-day history? What an odd way to put it. We later hear that she has been visiting her GP multiple times over the last 18 months, after likely EBV infectious mononucleosis.
And, given this is described as a 'typical case', why put the pelvic pain so front and centre? Why not muscle fatiguability instead?

Rheumatology for intermittent neck and abdominal plus a positive antinuclear antibody (ANA) result, with no evidence of inflammatory arthritis.
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This poor young woman has an intermittent neck.

There's a diagram that tells us that the trigger causes an immune response with an arrow to a box with "Brain, spinal cord, nerves, hormones".

This is good:
Diagnosis requires careful analysis of the patient’s history and pattern of symptoms, plus exclusion of other fatiguing illnesses.
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But there is nothing to explain what PEM is (and apparently it is something different to 'symptom exacerbation in response to stressors such as physical or mental over-exertion).
The key features that usually distinguish CFS/ME from other fatiguing illnesses are:
  • post-exertional malaise (PEM) (immediately or delayed 24 hours or more)
  • symptom exacerbations in response to stressors (physical or mental overexertion, new infections, sleep deprivation, immunisations, or other medical comorbidities)
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Offering information about the biological changes underpinning the symptoms can help patients and their families understand and accept the diagnosis. See CFS/ME Primer for Clinical Practitioners for information about the pathophysiology of CFS/ME and here for a summary of current research.
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Gosh, it appears that the writers have information about the biological changes underpinning the symptoms! Clicking through to the recommended primer for clinical practitioners, we can read that, for example,
A recent study of the drug rituximab provides indirect evidence for chronic B cell activation, as well.
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Because, of course, we can't just say, there's no good evidence for anything much yet.

The link for a summary of current research is to a write up by Dr Vallings of the 2015 Invest in ME conference. It's a grab bag of all sorts of statements good and bad. I think if you are going to direct GPs who are only just learning about ME/CFS, you need to curate the research you give them with more care. Examples of the information given:

Bansal: He explained how fatigue occurs in many illnesses, but is the cardinal feature of ME/CFS. He said the post- exertional malaise is hard to explain..... (it isn't explained)
Fewer than 10% patients can tolerate alcohol.
Another unusual sign in 60 % patients is altered pupillary reflexes (alternating dilatation and contraction while a light is shined) and sighing respirations.
However chronic anxiety associated with ME/CFS will deplete energy further, contribute to faintness, cognitive difficulties and increased respiration.
Quite often it is a difficult question of how far to delve into issues such as life events, stress, physical injuries, environmental toxins and childhood trauma as there is at least some evidence that they may all play a cofactor role in precipitating ME/CFS.

Jo Cambridge:
In ME/CFS there were positive results from use of rituximab in Norway.

I could go on, but the point is, these are links with some information that is out of date and some information that was wrong even back when it was written. They will confuse rather than enlighten doctors.
 
This is great:
There are no curative therapies for CFS/ME. Treatment aims to reduce symptoms and improve quality of life, with a focus on patient self-management, which is why establishing a collaborative therapeutic relationship is essential.

An important step is to acknowledge the impact of CFS/ME on the individual’s ability to work, to maintain relationships, to undertake basic self-care and to maintain self-identity. Frustration and anxiety can arise if there is scepticism towards CFS/ME patients - who may not appear ill - from their family, friends and medical practitioners.
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This is not:
Vitamin B12 injections may improve symptoms in some patients, as shown in a Finnish study. (Note B12 use should be guided by clinical response rather than blood results. Try a course of weekly injections for six weeks then assess the effect).
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We discussed the 'Finnish study' here. It is disturbing that the authors of this case study thought that B12 study was worth providing as evidence.
 
I have not read through but this sounds symptomatic of something to steer very clear of - the message that 'those experts know all about ME/CFS and you can too if you do a quick session here and get brownie points.'

The mention of positive ANA without overt arthritis is typical of not understanding autoimmune rheumatic disease. Lack of overt arthritis has nothing to do with the significance of an ANA. Lots of things here, like 'complex patient' are effectively 'nudge, nudge, we've all seen that before haven't we'.
 
Jonathan Edwards said:
The mention of positive ANA without overt arthritis is typical of not understanding autoimmune rheumatic disease. Lack of overt arthritis has nothing to do with the significance of an ANA. Lots of things here, like 'complex patient' are effectively 'nudge, nudge, we've all seen that before haven't we'.
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I find it odd that they didn't appear to follow up the positive ANA in any way.

and no significantly abnormal blood test results.
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So a positive ANA isn't a significantly abnormal blood test? If I had a positive ANA I'd want that following up rather more than appears to have been done here. But then I'm a raving hypochondriac of course with catastrophic illness beliefs. ;)
 
Do like the format but overall it feels like a somewhat skewed grab bag of symptoms, and a promotion for Ros Vallings. The two day thing at the beginning is a bit derailing. A few good things but a glaring hole where assessment for orthostatic intolerance should be. The advice for a couple of pinches of salt is something that is often given - even without assessment - and it just not good enough.
 
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I think there are also some good points in here.

Perhaps if you write a critique of the things that are bad and send it in name of a patient organisation, they might consider changing it a little. Was thinking mainly of the things you said @Hutan: 'complex patients', emphasis on pelvic pain in what should be a typical case presentation, the weird two-day history, inappropriate advice on supplements, claiming that "Fatigue severity declines when patients stay within energy envelop" presenting Vallings as the expert and referring to her summary of IiME conference etc.

I think it could be a bit simpler and more professional but it seems like a positive sign that they want to bring out information on ME/CFS for healthcare professionals.
 
On the one hand it's not all bad. It's not particularly good either. It does not effectively communicate the severity of the disease and has way too much focus on fatigue and "other fatiguing illnesses". Moving forward requires letting go of this failure, this isn't good enough.
Making the diagnosis can provide relief for patients, who have often been living with difficult and unexplained symptoms for some time.
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I'm so tired of this. No, it does not bring "relief" to have a discriminated diagnosis. It would if there were competent support but there isn't so no, not relief. We don't want "an" answer, we want the right answer, the one that will bring the necessary help and support, treatment or a cure.

The treatment and goals downplay the life impact. It presents it as something like a broken leg, where you can do most of the things you want, just much slower getting there. Zero mention of disability, likely because it is systematically rejected. For most patients disability is the single most important form of support because everything else is inadequate. With competent medical care this wouldn't be the case but nonetheless those are the facts.

I do appreciate advising patients to bring notes and for the physician to accept it as necessary. This is normally forbidden, marked down as evidence of "somatization", and a serious impediment to any form of support. Most of the time I did this it wasn't even read.

Discussion of PEM misses the mark on it being solely about energy. If only it was just that. PEM is hard to explain and identify but this only reinforces the fact that so much more is needed, that there is a serious need to build long-term experience and specialist services.

No, a "bedtime carbohydrate" will not help "fatigue". Good grief.

This is a good start. If the year was 1985. But it's about as adequate as facing a refugee crisis with doodles of tents on a napkin and a box of protein bars. ME needs specialist services and clinics, research tracks and serious efforts to overturn the disastrous nonsense of the last 30 years.
 
rvallee said:
Making the diagnosis can provide relief for patients, who have often been living with difficult and unexplained symptoms for some time.
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I'm so tired of this. No, it does not bring "relief" to have a discriminated diagnosis. It would if there were competent support but there isn't so no, not relief.
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Well, it certainly provided relief for me. Without a diagnosis, I was expected to have the workload of someone who was fully healthy, which caused my health to suffer. With a diagnosis, the expectations were greatly lowered. Also I could read about the illness learning how to manage it better and getting in touch with other people with the condition.

I think there are many others like me who are very grateful to get a diagnosis.
 
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Dolphin said:
Well, it certainly provided relief for me. Without a diagnosis, I was expected to have the workload of someone who was fully healthy, which caused my health to suffer. With a diagnosis, the expectations were greatly lowered. Also I could read about the illness learning how to manage it better and getting in touch with other people with the condition.

I think there are many others like me who are very grateful to get a diagnosis.
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When it actually leads to support or accommodations, of course. But that's not intrinsic relief, that's support. It's just very rare and the common framing is that it provides relief in itself, not because of the support it should bring. Hard to say whether that's what is meant here but it's what is commonly believed and just reinforces that misrepresentation.

Where ambiguity exists it's important to address it. In most diseases historical context is just that, history. In ME, historical context and failure are still the status quo, it has to be addressed directly, especially while it's still the norm for physicians to discriminate openly against us. I understand that it will make a lot of people angry but overturning failure of this scale always does.
 
I wonder if any review of documents that are intended for guiding doctors, needs to be read with an understanding of the language used and approaches within their professional community.
Doctors don't have much time, they need shorthand to some degree?
Perhaps 'complex patients' means something different to them than the non-clinician?
 
RoseE said:
Perhaps 'complex patients' means something different to them than the non-clinician?
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I am afraid that complex patient more or less means 'difficult' in the sense that a child can be difficult. There are other contexts where complex might mean with several problems - like someone with AIDS with malignancy and infections. But in this context it means difficult. It is patronising and I hate to see it used. Again it is an indication that the idea is that the GP can manage with no experience and a quick video - they don't need to understand all the details they can just remember the case is 'complex' and so they can muddle through.
 
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