ME/CFS is a mast cell disorder (hypothesis)

nanonug

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This is a non-exhaustive list of symptoms associated with mastocytosis and/or mast cell activation syndrome:
  • abdominal pain
  • intestinal cramping and bloating
  • diarrhea and/or constipation
  • nausea
  • non-cardiac chest pain
  • Helicobacter pylori-negative gastritis
  • malabsorption
  • oropharyngeal burning pain
  • aphthae
  • cough
  • asthma-like symptoms
  • dyspnea
  • rhinitis
  • sinusitis
  • conjunctivitis
  • difficulty in focusing
  • hepatomegaly
  • splenomegaly
  • hyperbilirubinemia
  • elevation of liver transaminases
  • hypercholesterolemia
  • lymphadenopathy
  • tachycardia
  • blood pressure irregularity (hypotension and/or hypertension)
  • syncope
  • hot flush
  • headache
  • neuropathic pain
  • polyneuropathy
  • decreased attention span
  • difficulty in concentration
  • forgetfulness
  • anxiety
  • sleeplessness
  • organic brain syndrome
  • vertigo
  • lightheadedness
  • tinnitus
  • urticaria pigmentosa
  • hives
  • efflorescences with/without pruritus
  • telangiectasia
  • flushing
  • angioedema
  • abnormal bleeding
  • muscle pain
  • osteoporosis/osteopenia
  • bone pain
  • migratory arthritis
  • interstitial cystitis
  • fatigue
  • asthenia
  • fever
  • environmental sensitivities
This list was compiled from table 3 on the freely available paper entitled: "Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options".

Based on symptomatology comparison, I think ME/CFS begs to be defined as a mast cell disorder.
 
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Interesting hypothesis - from the conventional sites about mast cell activation disorders that I have looked at it didn't seem that close of a match though.
 

nanonug

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Sounds a lot like me nanonung. Even some things I haven't associated with the ME/CFS before.
Two "good" things about mast cell disorders are that, 1) they are testable and, 2) they are (somewhat) treatable. With the above document in hand, it is possible to put a good doctor, maybe an allergist or a hematologist (if mastocytosis), on the right tract regarding diagnosis and possibly treatment.
 

floydguy

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Two "good" things about mast cell disorders are that, 1) they are testable and, 2) they are (somewhat) treatable. With the above document in hand, it is possible to put a good doctor, maybe an allergist or a hematologist (if mastocytosis), on the right tract regarding diagnosis and possibly treatment.
I'd stick with an Immunologist who is experienced with complicated immune disorders. An allergist may not have the depth of knowledge on the intricacies of the immune system. It's probably also worth going to major medical center like Brigham and Womens in Boston where there are specialist who get it:

http://www.brighamandwomens.org/Dep...umatology/DavidSloane/davidsloanedefault.aspx

http://www.brighamandwomens.org/research/depts/medicine/rheumatology/labs/castells/default.aspx

Cem Akin is also very knowledgeable.
 

Calathea

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From what I've heard, urticaria pigmentosa is one of the main markers. This means light brown lesions on the skin. How many people with ME have them? I do now, but I didn't get them for something like the first ten years of having ME.
 

floydguy

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From what I've heard, urticaria pigmentosa is one of the main markers. This means light brown lesions on the skin. How many people with ME have them? I do no, but I didn't get them for something like the first ten years of having ME.
It is possible to have Mastocytosis or Mast Cell Activation Disorder without the skin issues. It certainly makes the diagnosis easier if you have them. I've heard people are treated by the experts even if they don't have the markers, ie they have many of the symptoms and respond well to treatment.
 

adreno

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The million dollar question is: why does the IgE-dependent, and IgE-independent stimuli lead to excessive mast cell activation in some people? I think we are no nearer an explanation of ME by dubbing it MCAD/S. It is clear to me that it is part of ME, but not the cause of it.
 

nanonug

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The million dollar question is: why does the IgE-dependent, and IgE-independent stimuli lead to excessive mast cell activation in some people? I think we are no nearer an explanation of ME by dubbing it MCAD/S. It is clear to me that it is part of ME, but not the cause of it.
I do not necessarily disagree with your assessment. However, MCAS is testable and treatable, even if one does not know exactly what is causing the activation. In addition, once MCAS is identifified in a patient, it is actually possible to start looking for causes, even genetic ones such as c-KIT D816V mutations.
 

floydguy

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I do not necessarily disagree with your assessment. However, MCAS is testable and treatable, even if one does not know exactly what is causing the activation. In addition, once MCAS is identifified in a patient, it is actually possible to start looking for causes, even genetic ones such as c-KIT D816V mutations.
I agree with you. I think it's possible that it is the cause for a few people and maybe a contributing factor to others. Unlike with ME there is accepted treatment for mast cell disorders. More importantly there is acceptance in the medical industrial complex of mast cell issues. This offers up the possibility of some respect for other symptoms and issues that may be connected to ME.
 

lansbergen

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I do not necessarily disagree with your assessment. However, MCAS is testable and treatable, even if one does not know exactly what is causing the activation. In addition, once MCAS is identifified in a patient, it is actually possible to start looking for causes, even genetic ones such as c-KIT D816V mutations.
Treating mastcellactivation will not expel an infection.

Clearing the infection will stop the mastcellactivation caused by the infection.
 

floydguy

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Treating mastcellactivation will not expel an infection.

Clearing the infection will stop the mastcellactivation caused by the infection.
You really need to provide some support for those statements.

I don't think anyone is saying that mast cell activation is the be all end all. If one treats the mast cell activation it may provide a lot of relief and be one less thing to deal with.

Clearing what infection? I've not seen any evidence that mast cell activation is caused by infection. Please enlighten.
 

nanonug

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Treating mastcellactivation will not expel an infection.
Clearing the infection will stop the mastcellactivation caused by the infection.
It is true that blocking the immune system won't cure an active infection, quite the opposite. On the other hand, if mast cells are being activated by intestinal gram-negative bacteria lipopolysaccharides, blocking activation will certainly greatly improve patients quality of life.
 

adreno

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The idea has certainly been suggested before:
Mast Cells Implicated: Mast cells play important roles in allergy and anaphalaxis, as well as protection from infection and wound healing. They also play a role in the inflammatory process. This group at Tufts University observed that antidepressants are used to treat several conditions characterized by pain (CFS, fibromyalgia and interstitial cystitis), but that there was no known mechanism to explain the benefit they provide to some patients. To test whether these drugs might affect mast cells, they incubated human mast cells with several different classes of antidepressants and then stimulated the cells with substance P, a neuropeptide involved with pain processing. Only amitriptyline (brand name Elavil and other names) and prochloperazine (brand name Compazine and other names) inhibited mast cells. The authors suggest this finding may implicate mast cells in the pathogenesis of CFS. (Journal of Clinical Psychopharmacology, June 2011)
http://www.research1st.com/promising-cfs-research-findings/
 

floydguy

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Yes, Theo Theoharides is the Mast Cell guy from Tufts who has been to numerous ME conferences including last year's SOK @ NIH.
 

lansbergen

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Clearing what infection? I've not seen any evidence that mast cell activation is caused by infection. Please enlighten.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/
The Role of Mast Cells in the Defence against Pathogens

http://www.ncbi.nlm.nih.gov/pubmed/21242671
The effect of bacterial, viral and fungal infection on mast cell reactivity in the allergic setting.

http://www.frontiersin.org/Inflammation/10.3389/fimmu.2012.00146/full
Role and relevance of mast cells in fungal infections

http://rd.springer.com/protocol/10.1385/1-59259-967-2:363
In Vivo Models for Studying Mast Cell-Dependent Responses to Bacterial Infection

http://www.immuneweb.com/wenzhai/pdf/007001.pdf
MAST-CELL RESPONSES TO PATHOGENS

http://www.springerprotocols.com/Abstract/doi/10.1385/1-59259-967-2:363
In Vivo Models for Studying Mast Cell-Dependent Responses to Bacterial Infection

http://www.ncbi.nlm.nih.gov/pubmed/22125314
Virus stimulation of human mast cells results in the recruitment of CD56⁺ T cells by a mechanism dependent on CCR5 ligands.






http://bloodjournal.hematologylibrary.org/content/111/12/5467.long
Human mast cell activation with virus-associated stimuli leads to the selective chemotaxis of natural killer cells by a CXCL8-dependent mechanism

http://www.ncbi.nlm.nih.gov/pubmed/21576486
Immune surveillance by mast cells during dengue infection promotes natural killer (NK) and NKT-cell recruitment and viral clearance.


http://www.pnas.org/content/107/19/8748.full
Mast cells elicit proinflammatory but not type I interferon responses upon activation of TLRs by bacteria