Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to ...Treatment: A Case Series, 2023, Weinstock et al

Hi @rachel76,

To me this is amazing only in that it is extraordinary that anyone should publish what is no more than pseudoscientific make-believe.

They say that one person in 6 has MCAS and that it is due to a defect on a controller gene. This is plain nonsense.

There is no indication how they chose the patients they describe or why they think their symptoms have anything to do with mast cells.

I see nonsense of this sort as quite damaging to PWME because it encourages the idea that they are tied up with false beliefs about non-existent illnesses.
 
https://www.mdpi.com/2075-4426/13/11/1562

Abstract
Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various neurologic and psychiatric disorders, including headache, dysautonomia, depression, generalized anxiety disorder, and many others. Although MCAS is common, it is rarely recognized, and thus, patients can suffer for decades. The syndrome is caused by aberrant mast cell reactivity due to the mutation of the controller gene.

A case series is presented herein including eight patients with significant neuropsychiatric disorders that were often refractory to standard medical therapeutics. Five patients had depression, five had generalized anxiety disorder, and four had panic disorder. Other psychiatric disorders included attention-deficit hyperactivity disorder, obsessive compulsive disorder, phobias, and bipolar disorder. All eight patients were subsequently diagnosed with mast cell activation syndrome; six had comorbid autonomic disorders, the most common being postural orthostatic tachycardia syndrome; and four had hypermobile Ehlers-Danlos syndrome.

All patients experienced significant improvements regarding neuropsychiatric and multisystemic symptoms after mast-cell-directed therapy. In neuropsychiatric patients who have systemic symptoms and syndromes, it is important to consider the presence of an underlying or comorbid MCAS.
 
The article gives a huge list of symptoms for MCAS, and a prevalence of 17%. I assume this means they are calling all common allergies and sensitivities 'MCAS'.
I looked at the treatment section, which starts with drugs such as antihistamines and goes on to include some less commonly used drugs. This is the beginning of the treatment section:

Mast-Cell-Directed Treatment
Standard psychiatric medicines are frequently prescribed for patients presenting with depression and anxiety; however, a significant subset of patients is refractory to these treatments or experiences adverse events. Our case series suggests that when MCAS is suspected and then diagnosed, MC-directed therapy can be effective in improving neuropsychiatric manifestations. Treatment with antihistamines, MC-stabilizing agents, and other pharmacologic modalities such as LDN, along with non-pharmacologic approaches including avoiding symptomatic triggers and adopting low-histamine and gluten/dairy-free diets, can be effective, are inexpensive, and have a low side effect profile compared to standard antidepressant and antianxiety therapies.
[...]
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The limitations section of the article pretty much wipes out any conclusions that can be drawn from this case series, so I don't think any definite conclusions can be drawn:
Limitations
The limitations of this study include those inherent to the nature of a retrospective chart review, the small sample size, the subjectivity of patient-reported functional improvement following treatment, the lack of a control group, the referral bias and heterogeneity of various mast-cell-directed treatment, the influence of psychiatric medications, and the treatment approaches for autonomic comorbidities and other comorbidities. In addition, we recognize that there is some controversy regarding the diagnostic criteria for MCAS [6]. There are limitations related to our patient selection and the generalizability of our findings.
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The syndrome is caused by aberrant mast cell reactivity due to the mutation of the controller gene.
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Is there an explanation somewhere? Is this an inherited mutation or one acquired later in life? What is the controller gene?

Edit: answering my own question here. The gene seems seems to be KIT. They are somatic mutations. This article says 5-10% prevalence of MCAS. https://www.sciencedirect.com/science/article/abs/pii/S1040842814001498
 
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Yea, as per the above comments, it annoys me, when I read claims re MCAS on Twitter etc, since we need to focus on asking for research that could actually help e.g. for genetic studies like:
  • DecodeME; &
  • studies aimed at finding rare variants i.e. which identify genes & pathways to focus research on.
 
Hoopoe said:
Edit: answering my own question here. The gene seems seems to be KIT. They are somatic mutations. This article says 5-10% prevalence of MCAS.
Click to expand...

That paper says that there are lots of genes potentially involved as well as KIT and as far as I know there is no reason to think 10-17% of the population have any illness related to these genes - unless they are just referring to old-fashioned atopy.
 
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