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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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Clothes sensitivity?

Discussion in 'Hypersensitivity and Intolerance' started by Marco, May 13, 2010.

  1. Mark

    Mark Acting CEO

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    Have to add some more snippets for the other clothes-sensitives...

    1. Along with my clothes sensitivity, I also have itching, a kind of burning pain, and a kind of sharper 'stabbing' type pain. If I'm in contact with something that really sets me off, it just gets worse and worse. It itches so much I can't sleep until I'm exhausted. And I can't sit on cushions or sofas or use pillows. Basically the reaction was near-permanent until I got the safe haven of my chemical-free leather sofa, and for 2 years I slept naked on that and spent much of the day naked (massive heating bills, peeling myself off the leather every morning...oh happy memories...but it made all the difference...I could sleep again, and dream again...). Can anyone beat that for the nudity stakes?! Anyone else relate to the nature of the itching and burning?

    2. After a couple of years on the sofa - and detox (sauna), and supplements, and loads of other stuff - and I now buy a new set of underwear at least once a month - I reached a point where I mostly don't have the problem very severely at all. It's always there, but I'm kind of under some sort of threshold. So long as I get back to my safe haven soon enough after exposure to something that sets me off, I'm OK. But if I'm itching (sensitive) and I can't find a solution to make it stop, I deteriorate rapidly. Within a couple of days all my other symptoms start coming back, within a week or two I'm struggling to function at all. So for me, the itching/sensitivity turned out to be the fundamental thing to attack, at least once I had detoxed, got the air purifier, etc etc. And now, it's still the root and start of everything. But it took me nearly 15 years to get to the point where I am now: where I'm generally OK and can feel it come on whenever I'm in contact with something I can't handle.

    3. The latest breakthrough has been to discover that the overall effect is fundamentally 'non-local' in origin which is why it was so massively hard to find. By which I mean: if I am wearing 'the wrong' pair of underpants, socks etc, then I will be sensitive and itching all over my body. But when I change the key item of clothing, to something new or something that hasn't yet been infected (by what? fungal or bacterial infection? My own sweat during a natural detox cycle perhaps?) then the relief often begins instantly, although it sometimes takes hours to gradually die down, if it had got really bad - and at those times it's nightmare to know whether the new items of clothing I'm trying really are 'clean'. The whole effect is so subtle that it was unbelievably hard to identify, understand, and manage, through an unbelievably frustrating process of gradual observation. But now I've got it licked, I'm nearly back to normal - so long as I don't ever exercise or sit on a sofa or sleep in a bed or anything like that, all of which mean near instant itching hell, followed soon after by most of the core Fukuda symptoms list.

    4. Also, I am stuck with pretty much the same set of clothes all the time. I went through literally hundreds of sets of clothes to get to a point where only a handful are bearable. And if I buy new clothes, there's about a 1 in 4 chance that any given thing will be OK (assuming it's 100% cotton of course, nothing else will do) and after that, very likely it will only last for 2 or 3 wearings before it's "gone bad". Without cheap clothing made by chinese sweatshops, I don't think I would ever have got to this point; it would have cost me a fortune. And I don't know whether to burn or bury all the old stuff, or set up a second hand clothing emporium.:D

    Is any of this ringing any bells at all? Anyway, I really hope it helps someone....

    Oh yes, and then there's the response of the GP and skin specialist. The whole thing is "impossible" apparently. You can't itch and not get a rash. OK doc. Sorry. I'll try to behave in a more medically possible fashion in future...:D
  2. Sing

    Sing Senior Member

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    Mark, that is awful! What a great description of the whole thing, however--You've got it mapped!

    I have aching and increasing pain when I am wearing an offending item, and, like you, I may not always know which or what item it is, immediately, but once I identify and remove it, I get some relief right away, which then increases to my "normal" level of comfort or discomfort (depending on other things too)

    But what I most wonder is, given that I am sure this problem originates in brain processing, in neurological factors, NOT in the skin, per se, like an allergy would be--What medication or supplement, affecting the nervous system, would be helpful???

    Sing, Also On A Leather Sofa
  3. leela

    leela Slow But Hopeful

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    Underwear Superpowers and Nudity Stakes! How hilarious is Life in Couchland?

    Mark, your observations are so interesting. How does a piece of clothing go "bad"? I wonder what it is? Have you tried washing with Borax? Borax kills fungus, if that's the culprit. My guess though, is it could have to do with lower-grade short-fiber cotton that after washing protrudes said short fiber-ends that become the Itchy Fingers of Doom to those with sensitivity superpowers.

    In my own case, the skin sensitivity got much worse after I had my first shingles outbreak. I think the ground-glass feeling actually comes from my skin; there are often tiny crystalline granules in the skin that come off when I drag a finger across. I am presuming it is some kind of detox and/or post-herpetic pattern of sensitivity.
  4. Sing

    Sing Senior Member

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    Funny AND interesting, leela!

    I learned that when the human embryo is developing, the skin and nervous system arise from the same source. When I first learned this, it lent truthfulness to some sayings like "thin skinned" and "touchy". My body is literally very thin skinned, sensitive and "touchy", both in good ways and bad ways. For example, deer ticks can't make it up my legs unperceived. Their quiet moves and subtle ways don't pass my sensibility.

    So anyway, my point is that the problem can easily be both "in the skin" and from the nervous system, just like shingles.

    Sing
  5. leela

    leela Slow But Hopeful

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    See, it's your Superpower!

    Great point about the skin/nervous system. Makes a lot of sense.
  6. ukxmrv

    ukxmrv Senior Member

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    Many members of my family have the same clothing issues as I have. Only light, loose clothing. No frills or fripparies. For us, it is not a "novelty thing". We can wear new clothes but they need to "smell right" and be loose. Be the rigth fabrics and weight. I can only wear natural fibres and nothing tight. No jeans - too heavy. No waistbands - only light elastic. I live in my nightclothes like many of us.

    This trait in my family goes with the "air hunger", keep the windows open and the fresh air one.

    XMRV+
  7. Sing

    Sing Senior Member

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    ukxmrv,

    Your description of your family reminds me of ANGELS !

    Sing
  8. Athene

    Athene Never give up

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    Mark, I've just had a blinding flash of inspiration. It was caused by the mention of DREAMING, ITCHING and DETOX all in the same post. I wonder if you have a vitamin B6 deficiency?

    It causes general tingling/itching,
    you stop dreaming (I just learned that from Leaves and doubled my dose, and I am dreaming every single night after no dreams at all for 24 years - it is so exciting and fun to dream!),
    You need it for methylation so toxins will make it run out much faster
    You also need it for getting rid of histamine so allergies will make you use up lots more of it and thus run out faster.

    Leaves told me to take P5P which is the activated version and much better. You need 50mg a day of P5P (not more) and it is best taken as part of a B complex.
    Though I never had itching as bad as you, I did spend a lot of time scratching like a dog with fleas. I have hypereosinophilia so I assumed it was just that I was degranulating for England, but it has improved quite a bit with the higher dose of B6 so maybe it is a direct result of that.
  9. Mark

    Mark Acting CEO

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    I haven't tried Borax. Actually I have been extremely cautious with using any kind of chemicals fungicides etc, because the sentivities that were initially identified were to certain synthetic chemicals, and early attempts at fungicides suggested that I was even more sensitive to them than to the fungus. But I'll try to find a way to try out Borax safely.

    Actually my last thinking does seem to be gravitating towards something more consistent with the 'fibres' type of theory. Most recently, again due to the continuing improvement, I'm finding that I can get the same sensitivity symptoms with any tiny thing that digs sharply into my skin. So a typical experience now is finding that I'm starting to feel sensitive again, and casting around for a few minutes to figure out what caused it, and often it just turns out to be bits of dust I'm sitting on - which are pressing on me and causing irritation - through clothes! - and I can feel the point where the irritation is centred on, identify the source, and get rid of it. Extreme though this may sound, a single speck of dust on the sofa, which I'm lying on, can cause the sensitivity to increase and spread over the whole of my skin. Also I've noticed that when I've been eating things that set me off, and my gut is in a bad way, the skin sensitivity generally is greater. So I see them as related: anything either in contact with skin or gut that causes irritation, is placing the whole of the 'surface of the body' under stress.

    Reminds me that in chinese medicine, if I have this right, the inside of the lungs are considered part of the skin! Which is basically because they fundamentally form a boundary between the body and the outside world. I guess maybe the gut would also be part of the 'skin' then, in chinese terms.

    Also: leela you mentioned shingles at start making it worse. Reminded me to mention that my own sensitivity seems to date back to an incident when I stayed at a friends house and had a really, really extreme episode of "itching" while in that bed. It was rather different to what happened subsequently. The experience was like millions of tiny insects crawling around underneath my skin. That's the only way I could describe it. It was right through my whole body.

    A few months ago, I came across "Morgellon's disease", which looks like a variant of ME/CFS in which this itching is prominent (and described in the most perfect terms to describe my own itching that I've yet found) and the rest of the ME/CFS symptoms are typical, but with the addition of one more bizarre symptom: the emergence of mysterious "fibres" from the skin, often around cold sores. This is what look like strands of cloth fibre emerging from the skin!!! It's really bizarre, and the name is cooked up by sufferers who are just not believed because it sounds so weird that nobody will believe them. But their description of everything else is so spot on, especially the itching, that I have to conclude I should believe these people about the fibres. So I'm quite exercised to think what could possibly explain these fibres, and the most obvious thoughts I've had so far are that they were presumably absorbed by the skin in a way that wouldn't normally be possible, and then you have bits of clothing floating around inside you.

    No real idea how this could be possible, but it seems like something like this must be happening. Another strong idea is that biological washing powders are responsible. Considering that they use natural enzymes to distinguish "dirt" from "clothing fibres", who knows their potential for bizarre behaviour in this area? I have heard the theory that these enzymes can "carry things to the heart of the immune system that wouldn't be able to get there" and cause immune dysfunction. Anyway, certainly when I first got ill the first big thing I identified for myself was an extreme sensitivity to bio washing powders, and it all started during a year where my washing was being done with bio powders, which was the first time I'd been exposed to them. Now of course I have had to go further and can't tolerate any powders at all, but biological powders were by far the worst at the beginning.

    So yes I think about the thing about quality of fibres a lot. It also fits with the observation that some clothes (oddly, often the oldest, cheapest and tattiest) remain fine for years and years, whereas new ones are problematic and the "good" ones are hard to replace. However, the counter-evidence is this: whenever I have gone away (eg on holiday) and stayed in hotels, I have found that bedding varies enormously: sometimes I'm straight on it and react straight away, other times I can immediately feel it feels cool, and soft, and I have no problems, and sometimes I find that one (human-shaped) patch of the bed is unbearable, and move around until I find an area of the bed I can bear to sleep in. The very noticeable thing in a fresh bed, is that each night it gets worse, and on the third night, the bedding has "gone bad" and I can't sleep in it any more. I've had the same experience with bedding and clothing at home. Most of it is only good for 3 wearings and then has "gone bad" in the areas I've been in contact with. I can feel where it's worst and where it's least bad.

    I've even gone so far as to conduct experiments "blinding myself" to confirm that the patches of fabrics that make me sensitive are the ones I've previously been in most contact with. I can even sometimes trace out the outline of the infected area.

    So it can't just be the fabrics themselves, and I've thought it must be either sweat or some kind of toxin that I sweat out. It seems consistent that after a couple of days of relief, eg in a fresh bed in a hotel, I then have a night where I sweat a lot, so maybe the vicious cycle is that as soon as the equilibrium is that there is more poison inside me than outside me, I then sweat out the poison onto whatever I'm touching. Noting of course that the "poison" is something ubiquitous, since it's on pretty much every sofa I've ever sat on, which is why I've assumed it's either flame retardants (I tested extremely sensitive to PBDEs, now banned in Europe because they're known neurotoxins in animals and accumulate in the body, but in ubiquitous use in the UK during these I was most ill), mold, or both.
  10. Mark

    Mark Acting CEO

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    Thanks very much for this Athene. I wasn't aware of B6 specifically. B vitamins in general have been mentioned as significant, and I improved during a year when I was taking sublingual B12 along with a whole load of other things.

    Dr Myhill's protocol, and a set of Biolab tests, did have some more detailed vitamin analysis than I got from the NHS. The approach was to test and identify deficiencies, often these are highly specific deficiencies, and the main foods that were the source of those deficiencies, in my case, was a list of my favourite foods - milk and cheese are full of the things I'm deficient in. So it's not like I'm not eating them; I'm either not absorbing them or they're being fully used up for some purpose. Anyway the approach they take is to trace through the biochemical pathways and construct a personalised list of supplements (most of which are core to all of us) to support the chain of events that gets to enabling absorption of the relevant vitamin.

    In other words if you don't have enzyme XX and therefore vitamin YY it does matter how much supplement ZZ you take, you won't be able to absorb it without the prerrequisites, so you have to supplement all the deficiencies in the chain.

    Anyway, I can't remember the specific vitamins they said I was deficient in, I'm going to check that right now...

    Final thought on my general situation though: I've reached a plateau of detox/awareness of sensitivities / lifestyle adjustment to manage them and remain just below the threshold of disaster. So I'm now largely symptom free, and all I'm left with is this sensitivity, which I stop my life to deal with as soon as it occurs. I have got every other symptom under control in the sense that I know how it happened when it happened and can reverse the process. But the fundamental sensitivity remains. For example if I avoid gluten, soya, tomato, etc etc etc for about a year, I then found once my gut problems had subsided, I could tolerate quite a bit. In fact I started eating everything I'm sensitive to again - but after a couple of weeks the problems returned.

    So my conclusion is that all I have done is to learn to deal with my own personal immune challenges, but the fundamental immune damage remains the same. Every account of somebody who's "recovered" fits that same pattern. They have "recovered" by learning to manage all the above, rather than having been "cured". Everybody I know who's "recovered" or "improved" would describe that reality if pressed, even though some don't think about it much. They still have to do X,Y,Z in order to stay "cured". So the problem hasn't been fixed, and it's entirely likely the problem is in the genetics, and is heritable, and completely irreversible, if it is genetic damage. and therefore it can't be fixed. But for at least some of us it can be lived with and worked around. Although I suspect for myself the genetic damage was perhaps more limited than those with more severe symptoms, and if there are other causes other than the one that caused my own problems, and if I just have one of several factors that can cause these problems, then I shudder to think how hard it would be to deal with more than one...it took me 15 years to start to get control of my own situation, and was so hard to detect that if there were other factors too, I'm sure I would have had no chance.

    OK I'm checking those vitamin tests now...
  11. Mark

    Mark Acting CEO

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    Found it. From Biolab. The following should normally be 15% or less according to Biolab, and higher percentages indicate deficiencies:

    B1 Thiamine 19% (borderline)
    B2 Rbioflavin 39% (poor)
    B6 Pyridoxine 16% (borderline)

    I've written a note based on phone consultation:

    B2 --> FMN, FAD, which are needed for uptake of B6.

    So the theory would be that it's my B2 deficiency which is at the root of the B6 deficiency, and then the question goes, what's behind the B2 deficiency...certainly not the foods I eat...but finding out would require further tests which aren't a financial priority for me at present...

    ETA: And I feel it necessary to add that on the NHS vitamin tests, everything was "normal" but many right at the bottom or top end of the "normal" range and I was assured that didn't mean anything and I was fine and "normal". And that the more specific tests for specific sub-vitamins, and the more advanced tests of Biolab for uptake and association were not available through NHS, and were clearly much more detailed. And that the explanation of the biochemistry all checked out when I looked into it a bit through wikipedia, ie the biochemical ideas don't seem to be any kind of scientific heresy to me, they are merely widely unknown within the NHS.

    All of which I have to mention because ironically the campaign against Dr Myhill is considering her theories "unscientific" because they don't conform to the "best practice" within the NHS - which as we know in our case, is in reality pretty much the "worst practice" in the world...so that "world turned upside down" aspect of the whole thing is always worth bringing attention to, although whether that will help turn it the right way up, I really don't know...
  12. Athene

    Athene Never give up

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    Just to complicate things, Mark...

    Some foods contain substances (nutrients or other) which actively block uptake of other nutrients. For example, if you always eat red meat and follow it up with a glass of milk your calcium and iron will compete for absorption as they use the same transport factor, and uptake of both will be approximately halved. So when looking at your B2 intake, consider what you take it with. Also, you may be consuming something or have some other factor going on which flushes vast amounts of a certain nutrient out before it can be used as needed. (Coffee, booze etc flush out everything, but there are other quirky things for certain nutrients).

    Also, my latest and favourite book about nutrition says that all the latest research shows the "normal" range for one person could be a severe deficiency for another, depending on their genetic makeup, medical condition etc, so being normal according to the old, established ranges is not as simple as doctors would have you believe. If you are a PWC with mercury poisoning you will need heaps more B6 than someone with a great intestine and efficient methylation, for example. Most of the normal minimums were established during the second world war and have never been revised since, and they simply mean that you do not have gross deficiency symptoms which would cause clinical illness or put your life at risk.

    The best book about this is the Nutrient Bible by Henry Osiecki, which is like a database of cross-linked nutrient dependencies and absorption factors.
  13. Mark

    Mark Acting CEO

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    Finally I wanted to very quickly give a reaction to the "out-of-sync child" info Jewel's posted. I checked it out very briefly, and had a think about the thread and Athene's recent problems, but I haven't had time to go into it in depth.

    I just wanted to note my impression, which is that while the descriptions on the "out-of-sync" links seemed very accurate, and relevant, I was left with the impression that this all had some worrying parallels to neuropsychological explanations of adult ME/CFS. Behind the "difficulties processing multiple sensory inputs" and the fluctuation of symptoms from day to day, could merely lie the same sensitivities and obscure triggers that the rest of us suffer from. In short I didn't see anything in Athene's description that made me think there's anything else going on than the same issues we have - just that the way that might affect a young child during development would seem different to how it affects us.

    So in short I would have doubts about any theory like this that understands much of the dynamics of how the problems work out in practice, but hasn't got a reasonable hypothesis about what causes the problem. ie: it's a problem if the people involved in this science aren't aware of the genetic damage, and that this is at root a physical neuro-immune condition, and that XMRV is likely to be the cause of the whole thing, or is at the very least an example of the sort of relevant physical cause we are looking for. (I would normally be more bullish, but I am stating things conservatively here because this is the minimum understanding I would expect from a physician in order to trust that they have a clue what they are talking about - and because most haven't even heard anything about all that stuff).
  14. leela

    leela Slow But Hopeful

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    Mark,

    You might find this article quite interesting, though it is from a number of years ago. The doc describes a process of transmutation wherein certain pathogens take forms that closely resemble what you describe.I saved a pdf
    and don't remember what website it came from, so I am going to try to upload it here--hope that's not against the rules. The same doc has a number of other interesting articles on this subject ("viteria", or mutated forms of pathogens) at his website
    http://www.ccid.org
    but I didn't see the paper I think will especially speak to you there on my perusal just now. I'm going to try the attachment function and see what happens.

    View attachment Alternativecellu&#1.pdf
  15. Mark

    Mark Acting CEO

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    That's worked fine Leela, thanks very much.

    It does indeed look quite intriguing in relation to Morgellon's specifically. The whole pattern does look very relevant to me as you say.

    It also introduces me to another new term: "delusional parasitosis", which I presume is yet another way for doctors to say "we don't understand your experience, so you must be imagining it."
  16. jewel

    jewel Senior Member

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    Response to Mark

    Mark-- I would be very surprised if sensory processing or sensory integration difficulties were not some manifestation of an underlying neurological or neuroimmune condition, virally or otherwise triggered. Is it part of a central sensitization, and if so, is the sensitization triggered by viral, mycoplasma, allergic, bacterial or other insults? In sensory integration theory, sensory integration is presumed to be a neurobiological function. This theory and approach were developed in the 1960s or 70s by an occupational therapist, Jean Ayres http://www.siglobalnetwork.org/asi.htm. While there is a theoretical framework, it is not a model looking at genetics, epigenetics, viral or other triggers... due to when it was developed and also due to the function of the theory and approach.

    The problem is, until we have effective treatment or a cure for sensory processing difficulties, we are left with techniques that help us cope, in addition to whatever other treatments we may be undergoing. Somebody who gets chronic sinus infections (and sinus headaches) might use hot compresses, for intermittent symptom relief, or a nasal rinse, while at the same time addressing the allergic or infectious (bacterial or fungal) causes of the sinus infections, without the hot compresses implying a psychogenic cause. It is likely that techniques that seem to some extent to modulate the sensory sensitivities should best be used in concert with other stuff, whether it is nutritional approaches, supplements, immunomodulators, and/or antivirals.

    But, many parents are understandably cautious about putting their children on supplements or other other medications, unless there is actual evidence of a deficiency, or they are already trying a variety of medical approaches, but the sensory difficulties are still persisting. In contrast to medication, the sensory integration techniques tend to be pretty well tolerated, benign, and even fun. Not a cure. Also, especially for kids, some of these sensitivities can really cause them a lot of discomfort, and in a domino-effect, cause discomfort to the parents and other family members. That is why I offered these resources, on the off-chance that they might be helpful to someone or other. For instance, a child who prefers soft clothing or who does not like crowded settings-- not a problem in my book, that is just that child's preference and perhaps personality, or sensory preferences. But, a child who has difficulty wearing most anything, or who cannot tolerate a reasonable range of foods so that nutrition may be impacted, or who is so sensory seeking (opposite pattern to sensory sensitive) that she or he cannot settle down to learn at school or is too rough without intending to be, thus constanty in trouble with adults and peers -- these little kids are a challenge to raise, but more importantly they experience their lives as challenging. So, anything that can help them have a more enjoyable childhood would be welcome, as far as I am concerned.

    I'm not sure that the techniques imply psychogenic causation... They arise from a field that straddles medicine and education. If, for example, an OT or a PT were faced with a person who has ataxia, they would be looking at techniques to help that person either remediate or compensate for that ataxia, rather than concerning themselves with the cause, since usually the person would have been referred post a medical workup... The medical workup would be looking at whether the ataxia was due to CP, a spinal cord problem, or what not. The actual techniques they would use might vary depending on the presumed cause, and yes, they have to learn a lot about physiology and anatomy for their training...and licensure (And I'm on thin ice here because I am trying to explain things that are really outside of my scope of practice.) Unfortunately, for many people, the medical workup does not yield an actual cause, as we well know. They may or may not even get a diagnosis.

    Similarly, there are educational approaches to autism that seem to help the kids function day-to-day, but do not concern themselves with the cause of autism. They are working with symptoms. They are dealing downstream from the cause... or approaches that help kids with dyslexia learn to read... or blind kids to learn how to orient themselves in space and be independently mobile, or children with spastic CP maintain range of motion for maximal mobility, or dyspaxic kids how to motor plan. None of these imply that the individuals do not have something real or even medically based.

    Of course, it would be best if we can find the treatments that are upstream (especially with autism) --preferably prior to permanent damage, with the understanding that for some people, the downstream treatments are pretty much all that is available now (e.g., someone who has lost an arm or leg in war or in an accident).

    Anyway, I most certainly did not want to offend anyone by sharing these approaches or body of knowledge, to the extent that I understand them. I honestly have no agenda regarding the causes of either CFS or sensory difficulties, and I can guarantee that people who work with kids using these techniques do not think that the children are behaving capriciously or that they are "making up" their over- or under- sensitivities. Similarly, though I think CFS is a biologically based disease (or set of diseases), I have been very much helped by pacing, which is a very non-biologically based approach, except in as much as it recognizes the finite nature of energy reserves and costs to overextending.

    I just reworded the above three or four times. This is why I am trying very hard to wean myself off of this forum or just to read whatever is of interest to me, but to refrain from posting --particularly because I can't deal with the stress of trying to word things so antiseptically as to obviate any potential for misunderstanding ... and even then... someone will misconstrue the intent or meaning.

    And, if I am reading but not responding, then I am taking but not giving. That is NOT who I am and NOT how I like to be in the world. I do have a background in development, learning, parenting, children with special needs or challenges, and related topics. I certainly cannot provide scientific information or updates with regard to CFS and related conditions; I do not have the professional background to be useful there. I can just ask dumb questions to other people's information. My intent was to provide some information, validation, and support mainly to Athene, with regard to her child. To give back, where I could, with what I know...:(
  17. Mark

    Mark Acting CEO

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    Hi Jewel,

    I know what you mean about spending ages going through posts and trying to make sure things are worded carefully. Imagine how much more careful one has to be as a moderator! :eek: It's a drag for sure, but words can be so easily misinterpreted that it does seem to need doing sometimes. And you ended up with a really good post after all your edits so looks like it was worthwhile doing so. :D

    On this occasion I myself perhaps rushed my post and failed to put in appropriate disclaimers to say I wasn't saying anything about you personally Jewel, nor any implied criticism. I did mean to add that disclaimer but I was a bit rushed, so I'm sorry about that.

    My impressions on the "out of sync child" stuff were pretty vague as I tried to make clear. I didn't go into any great depth in reading up, I just got that impression from a brief perusal. I thought I should mention those concerns, but they are just my personal opinions and impressions, you don't need to worry about whether you agree with me on them, you're no more required to agree with me than I am required to agree with Cort. I really hope the fact that I'm a moderator didn't affect your reaction to my post, I was purely posting my own personal impressions, and I've noticed that people react differently once I acquired that label which is a real shame because my perspective is still no more valid or important than anyone else's.

    I do get what you're saying about needing practical solutions, and the point that it's quite a different thing to experiment with unsanctioned (I won't say unproven) interventions on a child, compared to doing so on oneself. That is indeed a tough dilemma.

    I imagine these techniques probably are indeed helpful if they say they are. All I wanted to do was to highlight that the whole model concerned me a bit as a model, and therefore that the thing is going to be somewhat flawed because of that, and that as more-than-usually informed patients we hopefully have a good understanding of the dynamics of that.

    If there was a simple bottom line to what I wanted to point out, it would be this: according to Occam's Razor, there's no reason based on what I've read to conclude that Athene's child has anything different from what the rest of us have. Things like food all having to be served separately etc, sounds to me not unlike the sort of funny ways of thinking that some kids have. Could have its root in some early good and bad experiences with food sensitivities. Doesn't imply anything else beyond those sensitivities. I guess I was probably just pointing out the obvious.

    It's just that the "out-of-sync" description is probably as accurate a label as "out-of-sync" would be to apply to us, and "sensory integration" isn't a good description of our problems either. So I just wanted to suggest that note of caution - I'm not at all saying not to take what's useful from the intervention. Just to treat it the same way we would treat a similar theory as applied to us: be aware of the dangers of the flawed foundation of it, and take what you can that's useful.

    As I skimmed through the thread again, I noticed the part that first set my personal alarm bells ringing. You mentioned early on that kids tend to learn, as they get older, to wear the "clean but less comfortable" clothes for the sake of being sociable. Personally, I've got better my unlearning that behaviour. I wear the same dirty old clothes all the time because they're the only ones I can tolerate. It's a totally guiding principle for me to pay close attention to what I react to, and to avoid those things that make me feel uncomfortable - I tried for many years to overcome those sensitivities and tell myself that they weren't really harmful, and that makes everything worse, whereas avoidance of triggers makes everything better - it turns out to be the fundamental root symptom, for me at least. For me, that has been the biggest single breakthrough, learning to trust what I'm experiencing. So I would really be worried about anything that seems to be saying try to learn to cope with it (I'm not saying this theory does so, but that's my general concern). As you may have seen from my earlier posts, the big message I'm trying to communicate from my own personal experience is that taking great pains to avoid all the triggers as far as possible is what has alleviated all my other CFS symptoms. That has been the biggest single strategy for me. So that's my only motivation here, to communicate that observation in the hope it will help others.

    Once again, sorry if my post upset you at all Jewel, and if it did so and my moderator status had any part to play in that, then it needn't do so. It was purely a personal reflection, please don't take it to heart.
  18. Athene

    Athene Never give up

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    Hi Jewel,
    Thank you for your really well-explained and clear post. I would not have been able to explain it anywhere near as well as you did.

    I have seen behavioural-type therapies help my son a great deal with various problems in the past so I know they can make a big difference. Learning more about therapies, and indeed simply being able to organise them into categories that help me identify other signs which are part of the same big picture, is really helpful. I didn't read anything that stated whether they are considered psychological or physiological in origin and I assumed there is a physical cause which we just don't know yet. It is my firm belief that ABSOLUTELY ALL psychological anbd psychiatric illnesses have a physical cause that we just don't know yet.

    Meanwhile, Mark, I also understand why you reacted negatively to the behavioural therapy idea, because you see this from an adult's point of view and you know that it would be pointless trying to get used to scratchy clothes etc because it is impossible and only makes the whole problem worse. And it is very important for us to remember that when trying to help our kids.

    Some other things really can be helped by learning tricks to get over them. I have a friend with an autistic son who has a lack of sensitivity. He wants to stroke and touch everything, sometimes quite roughly, because he is not sufficiently sensitive to it. He always hurts animals by squeeezing them too hard and then gets bitten. Whenever I see him he sniffs me all over. He sniffs everything. She has made great strides ahead in stopping him doing these things and creating a controlled session when he is allowed to explore as he wishes. It hasn't stopped him having this problem, yet I don't believe he suffers from learning to restrain himself.
  19. Dainty

    Dainty Senior Member

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    Okay I'm late to the party and haven't read everything in this thread, but I wanted to chime in about hte clothes sensitivity issue. For me, sensitivities to the chemicals in the fabric such as dyes and pesticides is a clearly separate thing from my sensitivity to contact with certain fabrics (wool, for example, even organic, unbleached, and undyed) or other clothing problems. All my clothing has to be handmade from organic unbleached undyed cotton that's been boiled for a day or two, soaked in baking soda, soaked in vinegar, washed, and then the cyle is repeated over and over agian until I can tolerate it. For at least for me I'm 100% certain that the sensory problems are not caused by toxic stuff in the fabric.

    I do have sensory problems, though. Underwear is out for me...anything tight enough to stay on is intolerably tight....an hour or two max if absolutely necessary (such as a massage appointment) is it, and I suffer even for that. I thought I was the only one! Also the problem with tight things around the waist is mine as well. The only place I can have pressure below my hipbones, where I can loosly use a drawstring closure, but even that often feels too tight and I'm loosening it whenever I can. Anything higher up than that (above my hipbone) and within minutes it's completely intolerable...I'm practically frantic about getting it off.

    ....And no, I'm not claustrophobic....I actually love small, tight spaces, they make me feel comfy. :) (I just had to throw that out there)
  20. Mark

    Mark Acting CEO

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    Me too, that's another nuance that I haven't mentioned here yet. With the chemicals against my skin, I get a burning reaction, generally at the site of contact. With chemicals I breath in (like when I smell perfume) or with other chemicals (like washing up liquid or when handling a book with a glossy cover) I get a burning pain which, oddly, is always centred just below my left shoulder blade, and is a bit more like a muscular pain. With irritating fabrics, wool etc, it's more of an increasing itchiness at the site of contact. And with mold triggers, or when I've been exposed to any of the above for some length of time, it feels a bit like insects crawling around under my skin; something inside the skin, and also tingling pains which as they get worse (and if I try to ignore them) start turning into sharp stabbing pains a bit like a bee sting, appearing randomly almost anywhere in my body.

    The whole thing, needless to say, is "impossible". But it's SO nice to confirm that there are so many people out there who have exactly the same things going on...

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