Morgellons Investigation in UK

[Sadsack]

Looks like Andy Coyle's effort were not in vain. This is from the Morgellons UK website:



As of August 2008:

Extract: "the UK Government's plan for addressing this condition, is to investigate the symptoms of each person who suffers from this condition on an individual basis. The symptoms associated with this rare condition are wide ranging and non-specific and it is important that individuals are thoroughly assessed in the first instance by their GP, and any treatment tailored to their individual needs."

(Dr Ailsa Wight Head, Infectious Disease and Blood Policy Branch, on behalf of the Chief Medical Officer, Sir Liam Donaldson).

[Jo]

Hi Sadsack,

Thats a good way of putting it...Andy's efforts were not in vain.

I've had further encouraging news about the London Hospital for tropical diseases having a doctor with a special interest in Morgellons now....when I get any more news I'll pass it on.

My doctor has emailed me today as he wants to see my micrographs of larvae, so thats cool.

We should all do a big campaign push before Christmas...USA/UK effort.

Any ideas?

Jo xxx

[Sadsack]

Jo -
In the US, we are trying to put together a packet of information to distribute to the Legislature and Health depts. Once this is ready, it might work for the UK also. Will alert when it becomes available.
SS

[ladycolorado]

It is good to hear about this in the UK. That perhaps they can even see a GP. I have a good GP here, has known both me and my parents for many years. I have this fear that I might get referred away to some jerk however (like a dermatologist or an infectious disease doctor). I MIGHT be able to see them for regular complaints however.


There is NO good Lyme care in this area. Which is why I shall have to travel occasionally to make sure I am OK. I heard from the heads of Lyme groups a doctor might help ONE patient but helping any more than that the doctors get afraid. That is even if they will do that.


I hope a day will come when doctors can help those with Morgellons Disease without fear of ridicule. There are so many systematic symptoms which can be both disfiguring and debilitating. I have come a long way but I want to stay functioning. The MS like symptoms I had were really scary.

(LC)

[carla]

I think you should take a bit of credit for that letter too, Jo.
That site is Jos baby, Sadsack.
But I do think the reply is just a standard reponse from our corrupt government.Basically it says 'Go see your gp.'
carla
xx


Morgellons UK - Campaign 2008 - Raising awareness to the Public and Professionals

[pat]

Jo think you should be kicking a** if you haven't had a reply yet.It's almost 2 months since you wrote by the look of it.Fire an email off asking them if they can reply before their extended Xmas holidays!!!

[Baraka Obam]

This disease by no means is a rare condition, MAYBE your sympto of this disease is BUT IT IS NOT RARE . There are so many SYMPTOMS of this intruder. THE BIG PICTURE, this is a killer and it invades the whole body, it is SYSTEMIC for sure. IT IS NOT A SKIN MALADY. Have you been looking at others peoples skin lately, HMMMMMMMMMMMMMMMMMMMMM, how about their tongue, how about young womans hair line, the outside visuals are there. Red dots, brown spots, white spots on the skin, where do I stop. Just look at the populace, your symptom is but a latent one in others.

[hilly]

Jo.... that's very interesting about The Hospital for Tropical Diseases... I saw a consultant there when I first had this, and had the usual treatment ' perhaps a psychiatrist could help you ' ! and subsequently wrote him some 'strong' letters ! Would love to know who is now taking this seriously. It could be a great help to all in the UK..
Hilly xx

[pat]

Yes Baraka we know there are lots of symptoms but here in the UK they have all sorts of fictional names for them.Like Fibromyalgia,Lichen Planus,Bursitis,ezcema,psoriasis,Allergy to the sun
menopause (thats a favourite) stress,a virus.Loss of balance -no prob I'll send you to a neurologist-who looks at you and says you walk like an athritic and so you go round the treadmill again.Thats the lucky ones the unlucky ones are told they have DOP or they are self harming.We still have Burke n Hare working in this country y'know.

[Jo]

well, I've had an interesting week, morg hunting in the Uk population.

Yesterday's client had Rhumatoid arthitis and fibromyalgia (and spots on her chin). The bedroom smelt damp and morg fibres were on the mirror. The client said that she liked to soak in the bath, when she "got irritated all over".

Today's client with MS had mold in his bathroom and his wife said she didnt like using the fan heater "because of all the fluff that keeps coming out of it."

Both clients had creeping webs along the walls.

My supervisor was telling me about the high numbers of clients in the area that have MS. She told me that they think its to do with living next to the river Thames!

I've got a few more weeks of working here and I'm logging my findings.

Jo xxx