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Will the indifference of the UK authorities to ME claim one more life?

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Mar 22, 2011.

  1. justy

    justy Senior Member

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    from BT's website

    Our legal and regulatory requirements
    Our inclusion policies and activities are based on a range of factors, including a number of legal and regulatory requirements. Whilst these inform, they do not limit our inclusion objective of enhancing the lives of our older and disabled customers.

    The principle legislation regarding disability is now the Equality Act which came into force on 1st October 2010 and replaced the Disability Discrimination Act of 1995. The Act continues to make it unlawful to discriminate against a disabled person because of their disability unless this behaviour can be justified.

    The Act states it is against the law to:

    Refuse to serve a disabled person
    Offer a disabled person a service that is not as good as a service being offered to a non-disabled person
    Provide a service to a disabled person on different terms to those given to a non-disabled person
    Provide goods or services in a way that makes it unreasonably difficult or impossible for a disabled person to use the goods or service.
    This means that organisations, including BT, have a duty to make "reasonable adjustments" for disabled customers. This includes providing extra help or making changes to the way service are provided.

    All these legal requirements are covered by BT's broader ranging inclusion strategy, which also incorporates the terms of the General Conditions of the Communications Act and BT's Universal Service Condition.

    These regulatory conditions reflect our existing activities in a number of areas, including:

    Provide Textphone users with access to the emergency services, operator assistance and directory information services using short codes and Textphone call progress announcements
    Provide a priority fault repair scheme
    Offer to provide contracts and bills in alternative formats (such as Braille)
    Ensure 75 per cent of public call boxes are reasonably accessible to wheelchair users.
    BT's policies for inclusion cover more than a select number of customer specific issues. We try to embed customer and inclusion focused thinking across the organisation, especially at the product and service design stage, so everyone's needs are considered.

    This helps us ensure that older and disabled customers can be certain there will be products, services or advice that helps with their specific challenges. That includes how they interact with BT, the information and guidance they receive from us and continued engagement with them and their representatives to improve the products and services we provide.
     
  2. justy

    justy Senior Member

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  3. Countrygirl

    Countrygirl Senior Member

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    Thank you for that very helpful information, Justy. i have spent a most frustrating afternoon speaking with BT and ofcom. The last person I spoke to at BT was very surprised that the company have blocked even all her incoming calls and thought it was wrong. However, although I was told this action is very unusual BT does have the right to treat a disabled customer this way if they so chose. I am very surprised by their decision because the last payment was only two weeks ago and they are, as I understand it, still being paid the line rental by social services. I gather the problem is that Gillian has several calls registered on her bill, which were not made from her phone and she says she will not pay for those.

    It is very worrying because only Gillian can deal with the matter, but as she relies on the phone to do this, BT have made it impossible.

    I am not sure where we go from here as we seem to have reached stalemate. :confused::confused:

    C.G.
     
  4. justy

    justy Senior Member

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    Hi Country Girl, Gillian is very lucky to have you to do this for her. Could Gillian write them a letter urgently and or make a complaint. I know this all takes time, but as you say i cant see any other way round it. Are BT saying the calls were made on her phone? how is this possible if she only has incoming calls? This seems outrageous behaviour if the line rental is still being paid and Gillian is fairly up to date with her bills.
    Perhaps we could bombard them with e mails? what would we need to do this, would we need her account number? is there a particular office/person we could mail?
     
  5. justy

    justy Senior Member

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  6. Countrygirl

    Countrygirl Senior Member

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    Hi justy,

    Yes, I have her account number and that might be a very good idea.
    The calls were made before they cut off her outgoing line. Now it seems that they may have been taking two payments a month for the line rental. Her mother is going to contact them tomorrow and she may just pay them off in order to get Gillian reconnected again because they told me they are about to disconnect her line completely. Let's wait for the events of tomorrow and a call from Mrs McCarthy before we take further action. First it would be useful to prove that they have been taking two payments a month for the line rental. They certainly need to revise their policy in how they threaten the survival of a seriously ill woman. I have registered a complaint against them with Ofcom, for what it is worth.

    C.G.
     
  7. Countrygirl

    Countrygirl Senior Member

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    Just to let the folk here who speak on the phone with Gillian that we have ensured that her line has been reconnected.

    Just be aware that BT's claim to care for their disabled customers is grossly inaccurate. Despite being paid for the line rental and having paid the bill at the end of March (there is dispute over a problem with the line) BT not only blocked all out going calls but the incoming as well. They were well aware that G. is very ill and vulnerable and needs even her basic supplies like drinking water ordered over the phone. They are clearly a company to be avoided if you are vulnerable and sick. Embarrassingly, I am a shareholder.:eek:

    If they have any decency, they should apologise by donating money to a charity of Gillian's choice.

    C.G.
     
  8. Uno

    Uno Senior Member

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    Jeez this is absolutely DISGUSTING. I am seeing my local MP in the summer and will print this out and show him what this country is doing to it's citizens. This needs to make the papers.
     
  9. duckndive

    duckndive

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    Mark
    This thread isn't about me or my health issues. It's about someone who needs help and not of the kind she's been getting. There is a safety net and support is there. But you're not going to get it by butting heads with the organisations that can help you, by posting defamatory stuff about them on the internet, by making demands and not being prepared to adjust them. This is why Gillian needs an intermediary to take the heat out of the situation and do the talking for her. She also needs someone to tell her no sometimes.

    I've passed on the benefit of my experience but clearly it's not what people here want to hear so I'll leave you to it. Hopefully at some point Gillian will get what she deserves.
     
  10. Countrygirl

    Countrygirl Senior Member

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    Hello duck&dive,

    Forgive me for writing a rather brief response to your post, but I am in quite a 'dip' after spending a number of hours interceding for Gillian a couple of days ago.

    No, but your heath issues are relevant because unless you have experienced severe ME and life-threatening MCS or have acted as an intermediary for someone who is so afflicted I don't think you can appreciate the unique difficulties involved. For most, if not all, other conditions there may well be safety nets in place, but these are are either totally inappropriate for someone with severe ME/MCS or can be life threatening if implemented.

    .

    The help G has been getting is from a group of severely ill UK ME patients who have used their very limited resources to send her heat packs, drinking water, bandages, batteries etc regularly through the severe winter to keep her alive as the temperatures have plummeted to about -20. Prior to this her father, a skilled negotiator, who was awarded the OBE, was her chief advocate, but sadly he has recently died, leaving his daughter in a seriously vulnerable position. I would like to respectfully suggest that you are not possessed of all the facts and are therefore not in a position to judge the standard of his advocacy.


    As stated before, this is probably true for other diseases, but not for people with severe ME/MCS. Perhaps you are not aware of the unique problems involved.


    .

    'Butting heads' involved making a polite request to treat Gillian like any other customer of the company. She is a high care priority client and even if a healthy customer is unable to pay their bill (and most of G's bill was paid, including the line rental, although there was a dispute over the payment of some calls which were not made from G's number), only outgoing calls are blocked. BT unreasonably blocked all her incoming calls as well, which contravenes their pledge to disabled customers. All the people at BT were puzzled why their company had taken this action and believed it to be wrong but the managers refused to listen to their employees' representations on behalf of G. I think it is only reasonable for disabled people to be made aware that BT is prepared to take such an action, despite their pledge to protect them.


    She has had a number of skilled and highly placed advocates over the decades. I don't think you know her history.


    No to what? G. is asking for the right to survive.

    We have asked you what your experience actually is, duck&dive, but you decline to answer.

    If you truly do have relevant and successful experience with obtaining appropriate help for people with severe ME/MCS then please do let us know what that is. Your posts, although well meaning, leave us with the impression that you do not.


    Yes, we do, but you don't answer our questions concerning the relevance of your qualifications, which you haven't stated in the first place.

    What do you think Gillian deserves?

    Kindest regards,

    C.G.
     
  11. justy

    justy Senior Member

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    Thanks CG for this news and also thank you for helping Gillian so much even at the cost of your own health you are a kind and caring lady. Please have a rest now and dont listen to naysayers. I think they may mean well but actually havent said anyhting new or constructive.
     
  12. duckndive

    duckndive

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    Countrygirl
    My last post was directed at Mark who addressed some comments to me upthread. It wasn't referring to the situation with BT.
     
  13. pebble

    pebble Senior Member

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    Duckndive,

    I have crashed several times recently. I have been house bound for months and this site is my one means of contact, support and comfort.

    My energy and concentration is very limited. There are so many posts I would love to read but do not have the stamina.

    I so want to keep up with Gillians situation.

    I find your posts incredibly draining frustrating and so exhausting.

    Many of us are hanging on by the skin of our teeth.

    Please stop posting.

    Anyone who has experienced severe CFS/ME / MCS will know you could not have made some of the comments you have posted had you genuinely experienced severe ME/CFS/MCS.

    Also the fact that you have refused to answer so many direct questions speaks volumes.

    Your original intention in replying to this thread is no longer relevant.

    The fact is, many of us have found your posts to be draining and exhausting.

    So many of us do not have enough energy for day to day existence.

    Any kind of conflict is so exhausting.

    Your experience is not valued and your comments are not helpful.

    Please just stop posting.

    You are taking energy from people who are already drowning.

    Please stop posting.
     
  14. Mark

    Mark Acting CEO

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    Nevertheless, countrygirl said pretty much exactly the same thing I was going to say, so you can reply to her answers as if they were mine if you like. But I'll respond myself also since I have more to add.

    The reason for asking whether you have any direct personal experience of these medical issues is not to catch you out or ask you for personal information about yourself, and the forums do welcome people who are genuinely interested in learning about ME/CFS as well. But it's necessary for us to understand where you are coming from with what you are saying, because unless you either have ME/CFS/MCS yourself, or have experienced it indirectly through advocating for somebody who has, then frankly you simply don't know what you are talking about. If you are assuming that the normal rules apply to us, then you're very much mistaken.

    I think you make some very reasonable suggestions about what is generally effective in getting results with authority. The problem here is that we are in a blind spot. I think it's reasonable to assume that you aren't in that blind spot and haven't dealt with it personally, since you have ducked the repeated questions about that and since I have yet to come across anybody, in 'real life' or on the forums, who has MCS and who has not hit the kind of brick walls that Gillian faces. It will take somebody really, really special to do the kind of interfacing you describe.

    Perhaps I can illustrate the problem. I was in hospital overnight for an emergency dental operation a week ago. Dental pain is the most intense; I've discovered new levels of pain in the last few months. I had to have general anaesthetic and I was in overnight. The whole thing was no fun - but the two worst things I went through while in hospital were (a) the bandage used for the wound from the operation, on the opposite side of my neck to the operation: I reacted to the glue and it hurt like hell for 24 hours and was red raw when it came off; that eclipsed all the other pain, and (b) the TV at the end of my bed, which the nurse insisted on switching on each morning and which just tore through my head like a knife.

    I told everyone who asked about other medical conditions and my general health that I had MCS/CFS/ME, of course, but not a flicker of recognition from anyone as I expected. Blank looks. Of course they had no clue how to make any provision for my sensitivities. I couldn't tolerate the bedclothes (though surprisingly the pillow was OK) and had to get rid of them and wrap myself in my leather jacket. I got a bit of grief for my odd behaviour in the bed; in the end I gave up trying to sleep.

    In short I had zero recognition of my health needs and found myself in a potentially dangerous environment as regards sensitivities...but I was expecting that. I coped...this time...

    I have to say, the standard of service from the NHS hospital, the professionalism of the staff, the speed and efficiency, the overal quality of how I was dealt with, were just excellent. It's the second time in the last 6 months I've had to go into hospital and both times I was blown away with how good our NHS is. It really did get better and better in the last 10 years, I experienced that directly, and it really is something to be proud of.

    It's just that it doesn't cater for the needs of people with ME/CFS or MCS whatsoever: it doesn't recognise them at all, and much of what it does is unintentionally harmful to us. I have relatively mild MCS now - or at least, it has been so long since I've been successfully avoiding everything I need to stay away from that I can tolerate the odd whiff of perfume now and again without getting burning pains in my back and migraines (I just feel a bit nauseous); I can put up with 24 hours of burning pain and rash on my face from the bandages because once it's over, when I get home I've got enough in reserve to make a recovery within a couple of days. Compared to Gillian, I'm very lucky indeed.

    But the reality of her situation is that they are still, obviously, not fully recognising her health needs, and will, I'm sure, be imposing requirements on her for assessment that would expose her to factors that could well prove fatal, and they won't know anything about those issues, they likely won't believe them, and they'll do her a mischief if she lets them.

    How you negotiate with that situation I don't know, but these are not "demands" that she can be "prepared to adjust", nor does she need somebody to "tell her no". These are health needs, these are dangers to her health, and what she needs is for those needs to be recognised and catered for.

    There is a safety net, but we slip through the holes. All of us here know that; to suffer from MCS is to understand that reality with no room for doubt or compromise. If you have any realistic ideas as to how to change that situation, or any practical support or services to offer, then I'm sure we'd all love to hear them - but Gillian knows what she needs to survive and the authorities know nothing about it, so compromising on her "demands" doesn't sound like much of a way forward to me.

    She needs somebody to tell her "yes". We all do.
     
  15. Countrygirl

    Countrygirl Senior Member

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    DucknDive, Mark has explained this so clearly and my personal experience endorses this. The NHS has been and is in a state of 'innocent ignorance'regarding our health issues and requirements and this lack of knowledge has resulted in unintentional 'abuse' and consequential severe decline in health after interacting with members of the medical profession, especially after admittance to hospital.

    To give a personal example, I have been admitted twice in the last three years after experiencing stroke-like events of the brain stem, when my blood pressure seems to over-compensate for hyopofusion by sudden huge and dangerous hikes in BP, which have left me unconscious and with permanent damage. I have been admitted to A&E by ambulance on oxygen. The first time, as soon as they discovered I had a diagnosis of ME their helpful attitude to me markedly changed,and they discharged me in the middle of the night after telling me there was nothing wrong (I was later confirmed to have permanent damage caused by the event). They told me to leave, even though I couldn't walk as far as the door and had no one to call for help. I tried to explain that I was disabled by ME and couldn't exit the department without help. They were unmoved by this and clearly didn't believe me. It was a scary as they clearly believed that I could walk if I chose to and they wouldn't assist me.

    On the second occasion, I heard them laughing and poking fun at my ME diagnosis and was alarmed to hear them conclude that I must therefore be a difficult patient for having such a diagnosis. Their response was again to discharge me. I struggled to leave the department, but couldn't make it to the door and had to sit on the floor and prop myself against the wall. It was humiliating. They did then at least give me an immediate ECG and told me that I cardiac problems and I was admitted to the high dependency ward. Unfortunately, however, I reacted severely to some chemical in the ward and by the following day couldn't stand up at all. I had to leave in a wheelchair and I relapsed severely for three months. I never had any investigation of my cardiac issues because my GP intervened saying he doesn't believe in abnormal results on hospital machines that he doesn't witness with his own eyes. He doesn't permit any testing for patients with an ME diagnosis and he said that the brain event and heart issues were due to my (non-existent) condition. In fact his response to my second brain event was to ask me, 'When are you going to get a life?'. This has taught me that it is still not safe to fall into the hands of doctors when you have ME/MCS. How many other serious conditions that cause comparable severe debility and disability engender this type of attitude from the NHS? Would someone in late stage cancer, HIV, MS or Lupus be left to lie on the floor, be denied food and discharged from hospital in the middle of the night with no help and too sick to walk? What sort of safety net is this?

    When I was admitted for three months for 'nursing care' in a chronic and terminal ward, being too ill to even sit up for more than about three minutes, I was told if I wanted to eat, I would have to walk to the dining room. I was too ill to do this, and when I tried I collapsed on the floor and couldn't get myself up and back to my bed. The nurses just walked around me and told concerned patients to leave me lying there. Those three months were a grim experience as the nurses poked fun at my severe debilitating condition, which worsened as a result of their treatment of me.

    It is not safe for those of us when experiencing severe ME and MCS to risk falling into the hands of the NHS. This is especially so for Gillian, whose reactions are life threatening. None of the doctors in the county have any understanding of the condition and their well meaning interventions could cause fatal consequences. This is the quality of your safety net for those of us with this illness, DucknDive. To risk falling into it could cost us our lives and, at best, results, for me and for others, in a severe and very prolonged relapse in which we cannot care for ourselves. Of course, the NHS then disappear off the scene and we are left unable to feed ourselves and struggle to survive as they ignore our plight, even though it is their inappropriate treatment and attitude that is the cause of it.




    This is important ducknDive. Do you have personal experience of negotiating the type of problems we uniquely face with this illness?






    Sadly, this is still true.

    Have you read the story of Lynn Gilderdale, DucknDive? The book has just been published?

    This sums up the situation well, Mark.

    This is not about being prepared to compromise. It is about Gillian's desire to live. To 'compromise' could result in her death.



    :thumbsup:

    DucknDive. If you can help us here with how we negotiate the dangers of the ingrained ignorance of the medical profession, then we would be grateful to hear from you.

    I think we also now need to ask when does 'innocent ignorance' cross the line and become 'willful ignorance'. When will the NHS become liable for the serious harm they have and are causing us?

    kindest regards,

    C.G.
     
  16. Dainty

    Dainty Senior Member

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    I'm sorry I didn't see this thread sooner.

    I have severe MCS. My reactions to everyday chemicals are life-threatening. For years I fought to survive as I grew worse and worse and continually did not have a safe place to live. It reached the point where I was living 24/7 in a stripped down bathroom with no books, no computer, not even labels on supplement bottles to read. I begged my caretaker to bring me paperclips--that was the only safe thing I could use to stimulate my mind. Pages were torn out of books and placed between two panes of glass in a picture frame so I could read them. Even in this confined space with severe limitations my reactions were getting worse and worse.

    Purchasing a custom built safe place to live is what saved my life and made it possible for me to get on the computer again.

    My family knows someone who died of MCS. Even with a custom built safe house constructed exactly to her requirements, she continued to get worse and worse until her organs shut down.

    I'm good friends with someone who is in the process of trying to get a safe place livable but is dying from malnutrition (extreme food sensitivities) and a suspected gangrenous gallbladder. Her doctor agrees that she would probably not survive the surgery to remove it.

    I know of many others who are living out of shacks, cars, tents, etc. It breaks. My. Heart.

    Gillian's story does, too.

    I don't want to make this thread about me, but to anyone wondering about the legitimacy of MCS, of whether someone who claims to be that severe really does have to live that way, really does need her demands met fully--I have an example to share with you that should make things clear.

    My most common MCS reaction is my throat swelling, which restricts breathing, sometimes to a dangerous level. It is not anaphylaxis, because chemical reactions are not allergies; there is no histamine release. Earlier today I went to sleep as usual, I had been awake for about 20 hours straight so I was pretty exhausted and ready to get some deep, quality rest.

    But a few hours later I woke suddenly, my airway was completely shut; no inhalation whatsoever was possible.

    I instinctively bolted upright and began fighting to breathe. I strained to inhale, but no air was getting through. I tried again, and again, and again...I fought, my chest muscles straining as if my life depended on it--because it did--there was zero air getting through. Then, finally, after what i'm guessing was perhaps 15-20 seconds, a break...the tiniest bit of air made it in, and then another, I fought for every little bit I could get as the reaction slowly died down until I was again receiving sufficient oxygen. It took much longer for the entire restriction to subside, and for hours afterward I had significant chest pain just from the muscles straining so hard against themselves to breathe.

    I was bewildered as to the cause, so I made a mental list of possibilities and decided to avoid the ones I can manage until I had this figured out. I thought maybe it was a fluke that would remain a mystery, as some do.

    After several hours I needed to rest but was still wary of sleep, so I put on some relaxing music and lay down. After perhaps 2 hours had gone by I noticed the sensation of my throat swelling in my most common MCS reaction, bit I dismissed it as anxiety and began singing to distract myself. Mid-song my throat swelled to the point that I could not inhale without making a lot of noise, and I again sat upright, and again, in under a minute, it subsided to the point of being out of the "danger zone".

    Thus I reach the hypothesis that I am reacting to something in my bedding, and the reason the previous reaction progressed so far was because I was so deeply asleep that I didn't wake until my airways cut off completely. It cannot be an allergic reaction, because those do not calm down upon removal of the offending item. My bedding is homemade of unbleached undyed organic cotton fabric that had to be processed by boiling, washing, and soaking in baking soda and soaking in vinegar, and repeating the process over and over again for months before it even began to be tolerable to me, until I had no reaction. It has been okay for years. Now, as of 6 hours ago, it's gone. Most likely a kind of contamination is the culprit, and we may need to start all over again from scratch while in the meantime I sleep on bare wooden slats again.

    That is what living with severe MCS is like.

    If I could change it, I would. If Gillian could change her requirements, she would. She can't. I can't. It's the way things are.

    The difference between Gillian and I is that I currently have a "safe place" and she does not. I have an environment where, barring contamination, I don't have any reactions at all. This arrangement is what is necessary for any person with severe MCS to function and have any semblence of a quality of life. A safe place is the only hope for her, and it must comply with every requirement, and truthfully even then it might not be enough. But we must try.

    I'm okay; Gillian is not. If you're reading this, please do what you can to help her.
     
  17. Countrygirl

    Countrygirl Senior Member

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    Dainty, thank you so much for sharing your dreadful experiences so that others who do not suffer from this devastating condition can gain some level of understanding.

    I hope that you are soon able to remedy the contamination.

    Do you know what triggered your severe reaction in the beginning? Did you experience heavy exposure to toxic chemicals?

    Kindest regards,

    C.G.
     
  18. Dainty

    Dainty Senior Member

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    Yes. Very significant overdosing of albuterol inhaler, roughly 25 times normal dose multiple times a day for several days (complex story) is what I suspect did me in, but at the time I was also on antibiotics, prednisone, had bronchitis and was pushing my body to extreme physical limits on minimal sleep so I'm sure all that contributed. I developed "only" mild MCS and CFS from that (undiagnosed...doctor to doctor, all in your head, the usual), but when a few years later my CFS became severe then 6 months after that my MCS followed suit.

    So I think it was a case of initial chemical injury, and I might have been okay but then when my CFS took a plunge my system just started collapsing like a house of cards and the MCS hit with a vengeance.
     
  19. Mark

    Mark Acting CEO

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    Dainty, I'm wandering off topic, but do you have any clues as to the type of event that causes a perfectly good bedding solution to suddenly 'go bad'? This has always seemed the most baffling part of it to me - it seems to happen randomly, completely out of the blue...something that has been fine for years suddenly 'goes bad'.

    The only thing I can think of is that something must be coming out of me to re-infect stuff - I must be sweating it out somehow. Which suggests I'm detoxing something...or also maybe this is part of the lifecycle and infectiousness of some organism?

    And I also can't see any pattern to what provokes that detox event...maybe it's just a matter of time...my best guess is that it feels like once I'm rested enough, my body detoxes something that was really deep down, cleans out some kind of deep-seated infection, spreads this stuff over whatever I'm wearing or sleeping in, and then that provokes a reaction again and the cycle of figuring out what's infected and getting it replaced begins all over again. But I've twisted my head round so many times trying to figure out what must be going on there, and I still can't seem to crack that puzzle.

    It took one hell of a lot of work to even figure out what was going on; right now I can't figure out if it's my socks, trousers or shirt that's the issue provoking my itching; for a decade or so, I had no clue at all about all this and I was spending longer and longer in bed...once you run out of energy to get yourself out of that well and replace the bedding, you are in a real hole. For me, the effect is incredibly subtle, but cumulative, and it takes ages to go back the other way and get benefits from avoidance, so much so that when deep in the well you wouldn't easily notice the difference of getting rid of the offending item. So I do always wonder about severely bedbound people as to what is in their bedding, and whether all those relapses and remissions are caused by similar events - the arrival or re-arrival of some toxin or pathogen that's re-starting its lifecycle...or something...there has to be a simple explanation for all this but I'm still boggling my brain trying to figure out what that answer is...
     
  20. Mark

    Mark Acting CEO

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    Also, I feel the presence of this stuff really sensitively, if I sit on a chair long enough I can tell how strong the concentration of it is...some chairs I react in seconds, others take half an hour to start getting a little tickle of it and then it builds up. If only I could get down to see Gillian's place, I'm really curious what we'd both find in terms of reactions - consistent environmental reactions, or even reactions to each other...but it'd be a 5-hour drive to get down there at least, and I don't have a car any more...:(
     

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