Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.
- Thread starter Jonathan Edwards
- Start date
bicentennial
Senior Member (Voting Rights)
If people are experimenting wth anti-histamine in cases of Long Covid, it could have been prioritised by the national platform for evaluating research prioritising Long Covid.
The pandemic showed what the NHS can do when skills in software and statistics combine to equip clinics collecting and correlating prescription data input, as programmed. Why confine such programs to intensive care
I do not know why clinics cannot collect data on prescription of drugs being trialled by patients. The NHS talked about about facilitating interclinic interfacing 40 years ago. We might know if antihistamines work
Do the sensitive reations in question resemble sensitisation?
In occupational health, sensitisation is an unusual reactivity to traces of a substance following long-term exposure: for example:
- farmers exposed to hay dust
- dentists exposed to mercury vapour
- residents & workers exposed to mould spores (that can also start a transient allergy of the sort detected by skin-prick reaction, only for the duration of the exposed residence or job)
But Britain's Health and Safety Executive found a mine-field once required to investigate mould-spores in an office environment.
Crippling reaction to building dust from nearby demolition is unwelcome. The NS ignores most of it, so it may abound. But construction workers, always exposed, are rigorously tested, routinely, for the insurance
Exposures are largely ignored to the extent that it killed a child in whose name we now have a new law.
There was some opportunistic - or evasive - ncrease in diagnosis of some condition(s) with the questionable name of MCAS. Is it possible for this increase to reflect some increase in sensitisation to molecular traces?
Over decades, an industrious industrial increase of profitable synthesised substances can produce a parallel increase in sensitisation. Maybe also known as MCAS if ignored.
Which might suit the NHS no end due to an onslaught demanding that some refuse-nik part of the NHS resume the medical records of exposure
NHS records of exposure appear to have stopped or been stopped. Messy.
IF "MCAS" refers to the occupational health hazard of sensitisation then it was very familiar in occupational health medicine. But sensitisation was not at all familiar to a GP or hospital consultant
I have taken to calling MCAS a sensitisation. Is this correct?
Is it correct according to patient-reported symptoms? And is it correct according to the expertly consensual opinion of how many experts?
My other clarification question:
Is "MCAS" supposed to cause:
* abnormal sensitivity, intolerance, allergy, or a combination of all three?
- is this upon skin contact, inhalaton, ingestion or by any route?
- is it supposed to cause abnormally reactive reactions to any substance or signal generated within a body?
With the proviso which I must admit could be true, because no-one actually knows, the proviso that all substances, signals and other events generated in and by a body may be - oddly - manifestations of a mind
I gather the healty esoteric adept mind in question was promoted by Alistair Crowley, Thoth, Hermeticus, or Hermes, with the well-known logo:
"As Above: so below"
It looks like methods applied to modify the minds of people ill with ME/CFS - and now also Long Covid - are extending on offer to people with the suspected or diagnosed "ME/CFS associated conditions"
Methods also seeking inclusion as associated with broader terms like "infection-associated illness"
Unlike the coaching mental health therapists on offer, ill people are not adepts so they are offered the (OPTIONAL !!!) fringe of CBT. That cannot be NICE-compliant now this fringe option is restored as a core service,
Presumably this fringe of specialised rehab adepts will try to re-populate the "specialist" ME/CFS clinics, and no doubt take MCAS on board too
However it seems that the ill body subjugates the mind not the other way round. At least according to that psychiatry reliant on drugs - conceived by an addicted psychiatrist while high on cocaine
His treatment by psycho-analysis was designed to provide instant wealth as a niche market, otherwise unaffordable. So the profession expanded its market, turning wholesale to state-subsidised insurance offering drugs,
Eg offering drugs to the NHS / DWP program and to Medicaid programs. Then some multidisciplinary form of CBT offered an alternative to drugs. Like drugs offered an alternative to psycho-analysis.
Drugs cannot be so easily enforced. Behaviour modification and thought modification is not yet recognised in law as the invasive medicine it is for people suspected or diagnosed with any "associated" unexplained illness
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bicentennial
Senior Member (Voting Rights)
Jonathan Edwards said: "It is drivel. There is no need to implicate psychological "causation" in any major immune repsonse"
Are patients diagnosed with MCAS aware that its a prime candidate for some contrivance of "psycho-neuro-immunology"
I was repeatedly and urgently warned by firends to stop telling doctors that I am diagnosed with ME/CFS, so my brain was not working right. And then my brain went sharply downhill (which is why I had to tell doctors).
But I was warned by friends that each of these three reports was bound to be translated into mental health speak eg some mental illness
Other people warned authorities that it stigmatised all mentally ill people when people like me object that its a lethal mental-health approach to motivate overmotivated people on their last legs, already on a forced march - as if the world is one big chain-gang so keep going or drop dead
In reality, that sharp cns decline was because a chronic abscess infected soft tissue undetected as I was forced to persist then return after a year, and show extreme distress, get it detected and excised, shocked doctors.
All that and more in the face of a system set to discredit - and by libel obstruct - everything to-do with suspected and diagnosed ME/CFS. Good thing I was not also contending with a MCAS diagnosis.
That was 10 years before NICE managed a convergence upon the current ME/CFS Guideline. Now there is something crippling some people, and its suspected or diagnosed as if its some MCAS. So is it a definitive pattern?
Given a convergence, would definition of these unexplained symptoms, in a Guideline, help to resolve a stigma being so contagious it was making doctors averse? Likewise the hEDS saga and now POTS
Or maybe it is not the same stigma. May there are co-morbid stigmas and co-morbid aversions. What is aversion therapy for?
Anyway some collection of symptoms was prematurely or presumptively attributed to mast cells. I'd rather attribute it to zonulin.
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Jonathan Edwards
Senior Member (Voting Rights)
Sensitivity is often used to indicate a bad reaction even to trace amounts of e.g. nickel from a watchstrap or peanut proteins. It covers both classical allergy (peanuts) and other mechanisms (nickel sensitivity is not classical allergy but often get called allergy). Intolerance covers any bad reaction to anything much.
Part of the problem is that Afrin implies that MCAS is different from allergy, being due to a genetic problem with mast cells, not a sensitivity to anything in particular. (Others include allergy in MCAS.) Before MCAS came along ME/CFS was supposed to be inked to allergy, although that was never shown by any data. If MCAS and allergy are different things we have even more of a mess.