The presence of overlapping quality of life symptoms in primary antibody deficiency (PAD) and chronic fatigue syndrome (CFS): Bansal 2020

[Sly Saint]

Abstract
Background

Fatigue, sleep disturbance and altered mood are frequently reported in patients with primary antibody deficiency syndrome (PADS) on adequate immunoglobulin replacement therapy. This study aimed to determine the frequency of symptoms compatible with chronic fatigue syndrome (CFS) in patients with PADS.

Methods
The study involved the distribution of 682 self-completed postal questionnaires to ascertain the presence and frequency of symptoms compatible with CFS in patients with PADS. The reporting of symptoms for each patient were scored against the CFS diagnostic criteria used within our own South London Chronic Fatigue service.

Results
The frequency of symptoms compatible with CFS were evident in 26 of the 188 patients (16.25%) returning adequately completed questionnaires. We considered a bias in the return of questionnaires amongst PADS patients with fatigue to be likely. As such we estimated the minimum frequency of CFS in patients with PADS to be 4% based on the 682 PAD patients to whom the questionnaire was distributed. This was significantly higher than the 0.5% estimate of the prevalence of CFS in the community in western populations. While the presence of significant fatigue correlated with the presence of anxiety and depression, there was no association with self-reported lung damage. Sleep disturbance affected 60% of the PAD patients returning satisfactory questionnaires and as expected the CFS score was higher in those with greater physical limitation.

Conclusions
We conclude that patients with PADS have a high frequency of fatigue, low mood and anxiety. We suggest routine questioning for the symptoms of fatigue, disturbed sleep and altered mood in patients with PADS. The use of several treatment strategies in CFS may prove beneficial in improving the quality of life of patients with PAD.

https://link.springer.com/article/10.1186/s13223-020-0417-3

 

[rvallee]

The reporting of symptoms for each patient were scored against the CFS diagnostic criteria used within our own South London Chronic Fatigue service.

Ah. So not a valid cohort.

Background: Fatigue, sleep disturbance and altered mood are frequently reported in patients with primary antibody deficiency syndrome

Conclusion: We conclude that patients with PADS have a high frequency of fatigue, low mood and anxiety

Uh, would you look at that, patients who frequently report X indeed do report X. Stellar work, champs. The Nobel committee is on speed dial and anxiously awaiting further research on this groundbreaking effort.

We suggest routine questioning for the symptoms of fatigue, disturbed sleep and altered mood in patients with PADS.

What is it that they think "routine questioning" achieve or provide, especially given that they consist of a narrow and shallow slice with no validity, reliability or accuracy?

What is the point here? Oh, right, there is no point. Churn and burn. The circle must go round and round. Fatigue is one of the most common symptoms in all of medicine. Consequently it is frequently reported. It is also commonly misrepresented and misunderstood. This is sometimes a surprise because almost nobody paid attention to it for long and most of those who do today can't tell a donkey from a hole in the ground.

 

[adambeyoncelowe]

Chronic fatigue syndrome (CFS) is a clinical diagnosis based on over 6 months of new and significant fatigue that is not relieved by adequate rest and sleep and which is exacerbated in a delayed fashion by any physical, mental and emotional over-activity. It is frequently accompanied by non-restorative sleep, arthralgia, myalgia, autonomic dysfunction, headaches, hypersensitivity to lights and sounds and impaired concentration and short term memory. Many patients date the onset of their symptoms after a viral or other infection and often during a period of increased psychosocial stress. Routine tests for haematological and biochemical dysfunction, endocrinopathy, inflammation, autoimmunity and immune deficiency are normal and there are presently no diagnostic tests. Indeed, diagnosis is frequently based on patients fulfilling the Canadian [1], international [2] or institute of medicine [3] CFS/ME criteria, with normal blood tests and in the absence of a medical or psychological cause of the fatigue. Interestingly, patients with CFS frequently report recurrent infections and especially upper respiratory tract symptoms such as sore throat with associated cervical lymphadenopathy as well as recurrent ‘colds’ or viral-type symptoms. Importantly, the presence of these symptoms forms part of the diagnostic criteria for CFS [4, 5]. We have previously found significant abnormalities of B cells [6] and T cells [7] in patients with CFS who otherwise had normal serum immunoglobulins. This included increased numbers of naïve B cells and transitional B cells but reduced numbers of plasmablasts [6]. There is also a significant literature suggesting a subtle impairment of cellular immune function in patients with CFS [8, 9].

Annoyingly, it doesn't say which of these criteria they used, if any. Though Bansal has his score chart, so perhaps he used that. It does require PEM.

 

[Mithriel]

The BPS people now refer to PEM a lot but they do not mean what happens with ME, just a generic I feel bad after I do too much and it takes me longer than it used to to get over it.

Lucy Chu who did a comparison of what people with ME feel after exertion and how other people see it, refers to this as post exertional fatigue. We get a disturbance of the immune system and the consequences are delayed and out of all proportion to what we did.

When you hear other people talk about how they feel it is completely different.

What we have is so different from normal experience that no one else can understand it. This is not unusual. they use body suits to help doctors understand what there patients are experiencing in things like MS.

Unfortunately people think they understand fatigue so extrapolate their experiences onto us. The word fatigue should be banned from all discussion of ME because it gives this false sense of insight that is so detrimental to us.

 

[adambeyoncelowe]

The BPS people now refer to PEM a lot but they do not mean what happens with ME, just a generic I feel bad after I do too much and it takes me longer than it used to to get over it.

Lucy Chu who did a comparison of what people with ME feel after exertion and how other people see it, refers to this as post exertional fatigue. We get a disturbance of the immune system and the consequences are delayed and out of all proportion to what we did.

When you hear other people talk about how they feel it is completely different.

What we have is so different from normal experience that no one else can understand it. This is not unusual. they use body suits to help doctors understand what there patients are experiencing in things like MS.

Unfortunately people think they understand fatigue so extrapolate their experiences onto us. The word fatigue should be banned from all discussion of ME because it gives this false sense of insight that is so detrimental to us.

Except in this case the Bansal score chart specifically measures whether it was delayed and prolonged:

Delayed prolonged PEM after Physical, Mental & Emotional excess

[...]

Need 8 or more from 13 points to confirm CFS/ME with an absolute requirement for some form of PEM.

[...]

Delayed (>12 hours) prolonged (24hrs+) PEM gives 3 points while an immediate PEM (<3 hours) of >24 hours gives 2 points. Immediate PEM (<3Hours) lasting <24 hours gives 1 point.

Source: https://me-pedia.org/wiki/Bansal_Score_Chart_for_ME/CFS

So it's not perfect, but it's certainly better than the vague stuff we're used to.

It is surprising, though, that he doesn't describe PEM in this paper, since his score chart makes it essential.