British Skin Foundatio

[spotted dog]

Hi all the Peepes in UK I have at last found a charity that researches Skin Diseases, there are only 6 researchers, they have many events, Marathons etc if you want to get involved.
They have not heard of Morgellons but are interested in anyone who wants to send samples for research.
You can also have a box sent to you if you want to collect money for Charity.
I sent a small donation last week & got a quick thank you e mail.
For some reason my PC is playing up & I'm not able to put the link on this post, or I,ve got Brain Fog!! anyway if you Google British Skin Foundation you will see what they are about & form your own opinion.

I just think its about time we in UK had some research done for us....Spots

[skylark99]

This is a great find, Spot!
I had no idea that the BSF did research into skin diseases.
I looked at the research portion of their site and note that they do actually do a lot of research on recognized skin diseases.
But as I understand it, their research is on acknowledged skin diseases.
Ours does not fall into that category, instead has, by the definition given by most UK docs, some 'other' "root cause", and not one that puts us in a good light.

I wonder if there is another way to achieve the same assistance?

Instead of hundreds of us asking for research into what is not recognized in the mainstream as a physical illness, what if we had a real licensed doctor who believes in our illness as physical, contact them and starting a dialogue with a view to getting them up to speed and talking in medical language about how many people have these symptoms that are not being addressed and how to get some or all of us assessed and the problem looked into....

Jo knows a doctor trying to learn about our symptoms, and he may be willing to approach BSF on our behalf and inquire about samples/specimens being submitted. We can ask. I met him and only have good things to say about him, and hold him in high regard. He actually does think that we have symptoms of a physical illness.

An inquiry coming from a doctor may be taken seriously in a way that individual inquiries might not.
I don't think that we are taken seriously in many conversations. I wonder if this approach to have a doctor approach them on our behalf would be more productive?

I myself am hesitant to approach the BSF because of the stigma surrounding the symptoms of this illness. But a doctor approaching them would not have to navigate that issue.

Jo?

[Janice]

Also check out Greenpeace at Exeter university. This is where all the scientific research goes on.



Please keep an open mind that this is way beyond just a skin problem.

[spotted dog]

Hi Janice, will do....spots

[fritolay66]

I don't live in the UK, but am never the less interested in what you come up with.

Frito

[spotted dog]

Thanks Frito....Janice have looked at site but cannot see anything about any skin disease? research into it? perhaps I'm missing something...Spots

[spotted dog]

SKY look at GET INVOLVED on BSF site, scroll down to photo of womans legs, they are asking for peoples stories, even if involved with anyone with skin diseases..Spots..

[Janice]

Here is some contact information. I have emailed them with some info research on morgellons. I am going to call them shortly to follow through, and make sure it is not sitting in spam files.
Spot, this is just my opinion, but this is.not just a skin problem, but a systemic one. I don't think this was made by the hand of God, but by the hand of man.
After you do all your contacting with skin groups, just drop a line to them or a phone call.
Basically we have to make some noise!


You have some awesome researchers in the UK.




Greenpeace Research Laboratories

[skylark99]

I know Spot!! I saw it.

I almost fell off my chair, it looked like some pics on MRO and elsewhere that I have seen. I'd like to know what is the skin disease that is illustrated in that image. It is eerily familiar and similar, innit?

I know from experience that the minute I let up on my skin care regimen, that it gets much worse. I have been aware that this has not been helpful when being looked at in the past. After I figured this out, I went to some appts un-showered and with all my symptoms very visible. But this was unproductive of getting assessed, as by then, they just looked at the previous doc comments and did not bother to even look. Sometimes, they would not even listen to what I has too say, and would not answer my questions.

I decided to just take care of myself as best I can, because no one is helping. Even if I were to end up looking like those images you mention, I would still get no help or a proper assessment. Because the assumption has already been made by many doctors that this is not real and not physical in origin.

[skylark99]

I just looked up BSF grants and what they have been funding.
I am not sure that a bunch of patients with this illness asking BSF directly for help is the best way to get a foot in the door.

BSF does a lot of funding for the Dermatological groups in the UK including the one Jo cites in the below article that appeared in British Journal of Dermatology from the 87th Annual Meeting Birmingham, U.K. 10-13 July 2007.

I will put it below, so you can see what I am referring to.
What I am saying is that BSF works closely and funds dermatologists and some of their organizations.........
and that as far as the British Journal of Dermatology is concerned, this is what they think of Morgellons:

"The case highlights the ever-increasing role of the Internet in providing patients with potentially misleading information that can encourage self-diagnosis and resistance to appropriate treatments."

Here's the link to Jo's post here on mdr and the whole article below that.

Article in British Journal of Dermatology



====================

Morgellons disease: Fibre or Fiction?
S. Ogden and I. Coulson

Burnley General Hospital, Burnley, U.K.

A 45-year-old woman was referred to dermatology with a 3-month history of small fibres of varying colour emanating from her skin. She had brought to the consultation multiple microscope slides with small coloured fibres mounted upon them that she said had mainly arisen from underneath the skin of her palms. She specifically denied any concerns that there was any parasitic infestation of the skin, although she did describe her condition as an ‘infection’ and bathed at least once daily in antiseptic.

She had diagnosed her condition as Morgellons disease and had brought information about the disease downloaded from the Internet. Examination was unremarkable; vitamin B12
levels and Lyme serology were checked and were normal. She was reassured that there was no evidence of infection in her skin; however, she declined referral to psychology or psychiatry services and did not wish to consider treatment with antipsychotic medication.

Morgellons disease is considered by most dermatologists to be synonymous with delusions of parasitosis a form of monosymptomatic hypochondriacal psychosis. However, these
patients complain of fibres or granules emanating from the skin rather than parasitic organisms. There may be an associated psychiatric condition such as psychosis, depression or anxiety. Patients report symptoms such as sensations of itching, burning or things crawling on the skin as well as the production of fibres or granules from the skin.

The Morgellons Research Foundation was formed in America in 2002 and is dedicated to ‘finding the cause of an emerging infectious disease, which mimics scabies and lice’. The founder of the Morgellons Research Foundation derived the name from a condition described by Sir Thomas Browne in the 17th century: ‘that endemial distemper of children in Languedoc, called the morgellons, wherein they critically break out with harsh hairs on their backs’.

Management of patients with this condition is challenging. Patients require thorough examination and basic investigations to rule out organic disease. It has been suggested that once organic disease has been discounted, the use of the term ‘Morgellons disease’ when communicating with patients about their condition may be a more successful way of establishing a rapport, compared with the use of the more traditional term of ‘delusion’, which is usually resisted. Treatment options include antipsychotic medications such as olanzapine, pimozide and risperidone.

This is, to our knowledge, the first reported British case of Morgellons disease.

The case highlights the ever-increasing role of the Internet in providing patients with potentially misleading information that can encourage self-diagnosis and resistance to appropriate treatments.