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

[Countrygirl]

I can ttell you Mark that Gillian's place smells very strongly of mould. I had to keep going outside to breath some pure air as it made me feel ill.

C.G.

 

[Mark]

Figures. Has anybody ever had a go at tracking all that mould down and rooting it out? Environmental health should be able to do that. That would be well worth paying for. Mould is crucial in MCS. Really if I do ever get down there I would want some sort of biohazard protective suit, I reckon, given what you just told me...mould is a killer for me...

 

[Countrygirl]

Mark, I think it would be impossible to eradicate the mould as the hut is wet and the ground has been up to two inches deep in water.

C.G.

 

[justy]

Hi all. Thanks to everyone who has shared there stories on here of severe MCS and also of their mistreatment at the hands of the Medical authorities, i found it very moving and sad and i hope that it will help others reading this thread to see the necessity for a safe house for Gillian, but more than this for the safe house project that gillian has been trying to get up and running for some time now which will hopefully benefit many more M.E/MCS sufferers in the U.K.

What is the situation now with the threatened eviction? also is it possible that an alternative "stop gap" be found while the project gains some momentum again. The way i see it is there is not going to be a safe house for Gillian by this winter and she cannot go on the way she is. Is there any way aT ALL that she could be moved to a new location? or perhaps a new "temporary dwelling" be erected where she is and the old one taken down?
I know this is a lot to ask but it seems that something practical must be done soon.

All the best Justy.

 

[maryb]

CG - I am really disturbed to hear Gillian's place smells badly of mould, is she not able to smell it herself?
I too have to exit immediately any building where even the smallest amount of mould is evident. It really can't be doing her health any good.
I have a smallish wood cabin I bought from Dunster House about 6 years ago just before I became ill, I use it all the time in the summer but it is thick enough and substantial enough to live in, something like that would be ideal for Gillian, an ex-show house perhaps, the wood will have lost its smell etc and placed on a substantial base would be very dry, could we not organise something to raise money? get someone to donate a cabin? Is there anyone nearer to Gillian, who is not severely affected with ME who could take it on?

 

[Mark]

Mark, I think it would be impossible to eradicate the mould as the hut is wet and the ground has been up to two inches deep in water.

C.G.

In my experience it's always practically impossible to eradicate mold, but cleaning it up delivers a big leap forward in health.

Part of the dilemma for me has been that going near the mold to clean it is toxic in itself - but in the long term the spores given off are more significant so it's worth the effort in terms of cost/benefit, if it can be done.

Somebody should of course be doing this for Gillian.

Another part of the dilemma is that if you hit it with chemicals of course there are likely to be issues there too. I did make progress though by just scribbing it systematically with hot water, and a little of some natural cleaning products. If you get the vast majority of it at source it will take a long time before it starts growing back again.

One disturbing thing that I noticed was that when it did start to grow back, I first noticed it appearing on light switches...which I was touching...which I thought was suggestive...

Gillian does appear (from the video I saw) to have a whole load of her possessions around her, in a degree of chaos. I can't help wondering whether she has been taking some things around with her which may be infected.

Another big problem will be that the process of moving, even if to a very inert environment, might lead to a detox which could be a significant shock in itself...sometimes getting a better environment can make us really ill if locked-in toxins begin to detox. So that probably needs to be handled extremely sensitively.

This really does seem to be a major, major challenge, and what we are looking for here, I would suggest, is shortcuts of some kind: I do think that an emergency stop gap seems to be called for, but at the same time the long-term project is absolutely vital: absolutely critical for MCS patients in the UK, I would argue: to my knowledge we literally have nothing of this sort in this country and it's desperately needed: as a detox environment this surely has to be the place to start.

Perhaps we could contact Porton Down and ask them if they've got any ideas? This would appear to be in their job description, I believe they are for Defence?...

I still haven't managed to get through to Gillian...will keep trying...

 

[Countrygirl]

Mark, one of Gillian's great concerns is the serious detox she will experience if she leaves her present home. This will be a huge obstacle to any move, which must take place before next winter.

I think Gillian's phone is still not working. There has been a problem with the bell and I suspect it is just not ringing. She is aware of this, but I don't know when this is going to be sorted out as yet.

C.G.

 

[justy]

I have to say i agree with the above posters that the long term project is vital and we need to engage more, preferably well people to get involved.
Secondly a new hut for Gillian preferably on the same site is looking the best short term way forward, can this be sorted out? surely we could raise the money for this. Mary B's suggestion seems a good one. Mary could you give more details or a link so that i can look into the costs?

 

[justy]

Just another thought -any news about the eviction and also would a new hut cause problems still with the council re planning issues?

 

[Countrygirl]

Maryb, your suggestion is the only possible way forward I think, but it would have to be an old hut. I don't know where we would find one that it fit Gillian's needs, but it must be possible. We would also need a team of volunteers to erect it.

When I spoke with Gillian's mum a few days ago, she said that it is possible that the council is now backing down. I think they are now aware that the eyes of world are watching their every move in their dealings with Gillian.

As soon as her phone is working again, I will share all your messages with her. You have all been a great encouragement to her and she is very grateful for all your kindness. Thank you everyone.

C.G.

 

[Countrygirl]

Justy, I forgot to add, yes, the erection of the hut would cause a problem as the lack of planning consent is the reason for the eviction and the demolition of the shack. If they continue to refuse to grant permission, I don't know how we can overcome that particular hurdle. Maybe they will relent this time.

C.G.

 

[Dainty]

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'.

Right now my primary theory is that overexposure to similar chemicals tips off a deeper sensitivity to things the body was previously okay with. For this particular situation, I recently had to wear a holter moniter for 24 hours that not only caused skin reactions but also outgassed all sorts of chemicals. My first suspicion was contamination but now I'm certain that isn't the case, as I've discovered it's not the sheets but rather my homemade mattress containing (organic) wool batting that is the problem. I removed my mattress while on the moniter specifically to prevent contamination, and even afterwards used the sheets on it so if anything should be contaminated it's those. Thus my tentative conclusion at this time is the issue with breathing in close proximity to wool, and a bit more experimentation should confirm this.

I have had issues with wool previously, but only upon contat with mucos memberanes (lip swelled up, eyes, etc). The question of allergy or chemical senistivity is really blurred with this one.

But back to the theory of increased sensitivity. I've had a more clear-cut example happen before. I had been taking a supplement that greatly helped with digestion, had been taking it for years. I cannot swallow pills, so I'm very familiar with how all my meds taste. One summer I spent a couple days in a tiny old cabin out in the middle of nowhere....thought it would be good as far as chemicals go, but anytime I was inside it for more than an hour I'd develop the sneezing, itchy eyes, runny nose, splitting headache, and such that I knew wasn't good. I also noticed while there that I couldn't take this one supplement because it tasted horribly of mold, made me gag something awful.

Upon arriving home I discovered in earnest that this supplement really was an issue. The smell and the taste of mold was overpowering. I assumed that one bottle had gone bad and opened a new one - same thing! I couldn't believe it. I then looked at the lot number, thinking that whole lot had gone bad, and received a bottle from another lot. Same problem. When I forced myself to take it anyway I'd immediately start vomitting and became wuite ill. My caretaker called up the company, and we actually went so far as to send them some that I had tried, insisting they re-test them for mold, they did so and found nothing.

As it turns out, the supplement is grown on a mold medium, but the final finished product contains no mold, supposedly. But I was just fine with the supplement until I spent a couple days in that cabin, which I now presume must have had quite the mold problem that i was reacting to. Exposure to mold in teh cabin gave me increased sensitivity to mold in general and I was no logner able to take the supplemetn at all.

I suspect that one of the myriad of chemicals I was exposed to while wearing the moniter was similar enough to a chemical given to the sheep or used in processing the wool or to wool itself or lanolin that it bumped up my sensitivity to the wool. Just a theory...

 

[Dainty]

Countrygirl, do you know what Gillian's experience with ozone has been, if any?

Ozone is pretty bad for inhaling it directly (though some do as a therapy - I personally react to it) but as it oxidizes things it spends itself completely, so there is no residual gasses. Ozone would not iradicate the mold but it should kill off the spores in the air. And she could control the amount, starting small, so that only a small amount is killed off at first so as to control the rate of detox.

I usually have to clarify when I discuss ozone that I'm not only talking about the low dose levels used in some "air purifiers", as those emit a level thought to be at a "safe" concentration. For me, no concentration is safe to inhale. But the way ozone is used most effectively is in high concentrations, actually lethal levels. It would require electricity and evacuating the hut for perhaps an hour or two, not sure if that's even feasible for Gillian. And of course, starting at lower levels would mean that there wouldn't be a need to evacuate for as lengthy a period of time as the more powerful treatments.

I'm concerned about the laptop for Gillian....I know that for me and many others with MCS the fumes that any computer spits out are pretty bad, and laptops tend to be known for being even worse than desktops. Is there a plan to isolate and remove the fumes emitted so that Gillian isn't exposed to them?

 

[justy]

After reading Country girls post abpout Brian Nicholson who has been sectioned in the U.K i thought it might be a good time to bump this thread up. I am interested to know if anyone has had any further news about Gillian.
I have tried repeatedly to get a contact at Dell to look into getting a specially adapted laptop for Gillian donated but with no joy so far.
I have also been trying for a long time to get Cort interested in writing a piece about Gillians "Safe Houses" project but unfortunately he doesnt even repy to my mails -ive given up ion that front for the time being.

I do think though that this is a good time for highlighting the plight of many severely affected M.E patients in the U.K. There is always enough interest in Dr Wesslesys shenanigans on this forum, well this is the business end of his approach -what actually happens to people who are told that even though they have a proper diagnosis of M.E/POTS/MCS they are treated as hysterical psychiatric patients.
Sophia Mirza DIED as a result of this kind of "treatment" http://www.investinme.org/Article-050 Sophia Wilson 01.htm

Isnt it about time we started discussing this openly and transparantly - more attention needs to be brought to this issue.
Justy

 

[justy]

Bumping again.

 

[Countrygirl]

Hi Justy,

Sadly, I don't think anything has changed for Gillian. The most important objective is the computer as that would enable her to have contact with the outside world and to have more control over her circumstances. Only about one-sixth of the cost of a specially adapted computer has been raised so far, to the best of my knowledge.

The great concern is that another winter is looming and, if it wasn't for the generosity and care by a few people with ME last year, I don't think Gillian would have survived the severe conditions. I hope the winter is a mild one this year for Gillian's sake.

C.G.