LDN Conference Glasgow 24th April 2010 (focused on CFS and FM)

[Diva55]

Although we have an LDN thread I thought this ought to have a seperate thread. If moderators disagree could you incorporate it into the other thread - thank you.
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There's an LDN Conference in Glasgow on April 24th. Wish I could attend especially as they have two CFS patients presenting their experiences.

Very interesting that theyre doing a documentary on LDN I will watch the boards for any news of that.

Also was intrigued by one of the agenda items about Vitamin D & LDN.

This was on the Yahoo LDN for FM board. I couldnt provide a link as I think you have to be a member to read the posts.

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Tom Gilhooly is kindly hosting and chairing the event again after the success of last years European conference.

Dr Tom has managed to get Dr Jarred Younger to attend as a speaker (I believe this will be the first time Dr Younger has spoken at an LDN Conference so this should be exciting to hear his findings re Fibromyalgia). We also have the pleasure of Dr Skip attending from the USA (whom I believe supplies LDN to about a quarter of the LDN population with this drug and one who has always offered his support to us all).

On this side of the pond, we have Dr Tom Gilhooly giving a talk about LDN and CCSVI, Dr Pat Crowley from Ireland who prescribes LDN talking about his private practice experience, plus Brendan Quinn, a well known and recommended pharmacist in Ireland talking about the importance of Vitamin D with LDN.

If you look at the agenda below, you will see it is well structured with both the medical profession and patients talking about LDN (one of whom is coming over from Finland).

From my experience last year, I found attending these conferences in person provided me with the opportunity of meeting these LDN experts face to face who were very generous with their time and knowledge. I also thoroughly enjoyed meeting other participants which was very beneficial.

Dr Tom Gilhooly always seems to have a surprise in store and here it is . There will be a film crew attending the conference who want to interview patients and prescribers about this drug that has helped improve the quality of so many of our lives and will be doing a documentary on LDN! Yep - this truly has the potential of being massive.

Remember, this is a European conference, not a UK one so if any of you know anyone whos even thinking about LDN, please pass this link on to them www.bigonldn2010.com and encourage them attend wherever you are in the world. Having the opportunity to talk face to face with other users helps so much and in fact even if I was in the USA, I dont think Id give up this opportunity to attend !

Thanks for listening and please see the below agenda. We are all looking forward to April 24th and I know Dr Tom Gilhooly and his team will give you a very warm welcome indeed.



Saturday 24th April 2010

09.00
Tea/Coffee and registration

10.00
Introduction Dr Tom Gilhooly, Essential Health Clinic Glasgow

10.20
Dr Skip Lenz The American LDN experience

11.00
Tea/Coffee break

11.30
Brendon Quinn The importance of Vitamin D alongside LDN

12.10
Zoe Kamen LDN

12.30
Dr Pat Crowley Irish private practice experience

13.00
Lunch, Tea/Coffee

14.00
Dr Jarred Younger, Stanford University School of Medicine, LDN & Fibromyalgia

15.00
Maija Haavisto CFS Patient experience

15.10
Christine Fowler CFS Patient experience
15.20
Tea/Coffee break

15.50
Dr Tom Gilhooly CCSVI: Joining the dots

16.30
Plenary session with expert panel

17.00
Tea/Coffee and networking

18.00
Close

Best wishes and hope to see you there!

Jayne Crocker

Chairperson

 

[Frank]

Yes i knew they were gonna focus on CFS and fibromylagia this year. (i added that to your title)

 

[darkrobot]

Thanks for posting this- It sounds very interesting. I have been on LDN (amongst other things) for a couple of months and am seeing big improvements.

I would love to attend, health and finances permitting- does anyone know whether there is a fee? I couldn't find anything about cost on the link.

 

[Diva55]

Thanks for posting this- It sounds very interesting. I have been on LDN (amongst other things) for a couple of months and am seeing big improvements.

I would love to attend, health and finances permitting- does anyone know whether there is a fee? I couldn't find anything about cost on the link.

Hi Darkrobot
Just found this - The fee is 35. Good they recognise the need for a lot of breaks!

"There is a 35 per person registration fee which covers entry, four refreshment breaks and lunch. Please note that this is a non-profit fee"

This is the link to register:
http://www.bigonldn2010.com/#

I don't know if you've posted on the LDN thread - too many pages to take in! - but if you haven't I'm sure people would love to hear of your progress & also any tips you have for managing dosing & side effects.

Hi Frank
Thanks for fixing the title - makes more sense

Best wishes
Diva

 

[darkrobot]

Thanks Diva.

I will post on the LDN thread soon...

 

[Diva55]

This is a great summary about the conference. I highlighted the bit about Vitamin D & CFS:

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This years LDN 2010 conference in Glasgow took place on Saturday 24th April at the Thistle Hotel. Yet again, it was a highly interesting day that was enjoyed by all. This years conference was chaired by Dr Tom Gilhooly, and he welcomed everyone to the conference and explained that there had been a few last minute changes to the final agenda due to the Iceland Volcanic ash causing chaos to flights all over the world!

Despite this, the conference speakers did not disappoint!

Stephen Dickson
First to educate us further on LDN from a pharmacists point of view, was Stephen Dickson, from Dicksons Chemist in Glasg0w. Stephen had kindly stepped in when Brendan Quinn had been unable to travel to Glasgow, from Ireland, due to the air chaos.
Stephen reported that the numbers of patients that they dispensed LDN to, had risen to over 2500 and the numbers of GPs prescribing had risen greatly to 683. He reported that LDN had been prescribed for numerous different auto-immune conditions, from MS, CFS and Crohns, to Psoriasis and Asthma. He also reported that LDN is prescribed for different cancers too.

Furthermore, Stephen reported that Dicksons was inundated with calls regarding LDN and that customers seemed better educated and more informed about LDN and its benefits. Encouragingly, he reported that the feedback from patients taking LDN was generally very positive.

Stephen highlighted the importance of optimum levels of Vitamin D in the body as it normalises the immune system. Interestingly, he explained that it is believed that babies that are not exposed to enough vitamin D in their mothers womb can have an MS gene switched on. Taking vitamin D, through supplements and/or exposure to a decent amount of daily sunlight can counteract this fact.

Stephen continued his thought provoking presentation with information on Resveratrol, a compound found in the skins of red grapes and therefore in red wine (though youd need to drink hundreds of glasses to obtain the optimum dose so safer to take a supplement!). He explained that Resveratrol is thought to decrease the immune responses in MS as it triggers the apoptosis (cell death) of T-cells (bad cells). Stephen explained that the optimum dose is 1000-1500mg per day and that he will happily stock this supplement at Dicksons if there is enough demand.

Dr Gilhooly then thanked Stephen for his excellent presentation, prepared at short notice, and then welcome his esteemed colleague Dr Pat Crowley from Ireland.

Dr Pat Crowley
Dr Crowley spoke to the conference of his life in Ireland as a GP in a community practice. He explained that he had had the opportunity several years ago to interview Dr Bernhard Bihari about LDN. He explained that LDN can boost the endorphin levels by 200-300% and that they are the key to the immune system. Interestingly, he also explained that the endorphin levels in MS patients is around 20-30% of normal. The T-cell production is also out of order too in this patient group. Dr Bihari reports that the MS symptoms diminish or disappear once T-cell production regulates.

Dr Crowley recommended reading the work done by Dr Jill Smith who had published a paper on LDN and Crohns in The American Journal of Gastroenterology in 2007. He encouraged the conference audience to visit www.ldndatabase.com, where those taking LDN can register their names, report their experiences with LDN, and report the conditions that it has helped.

Zoe Camen - Crohn's disease
Dr Gilhooly then thanked Dr Crowley for his interesting presentation, and then extended a warm welcome to LDN patient Zoe Camen, who kindly talked to the audience of her experiences of Crohns disease and the relief that LDN had brought her. Zoes presentation was poignant and inspiring in equal measure, as she explained that she had kept a journal record of her experiences and of how Crohns disease had taken its toll on her life. Zoe spoke of the pain she had experienced, and of the great deal of weight she had lost and how she had been at her lowest ebb.

Zoe then discovered LDN, through relatives in America, and has never looked back. Through taking LDN, Zoe reclaimed her life, she gained weight and gradually increased her diet. She no longer spent days running in and out of the toilet and her quality of life improved greatly.

Dr Gilhooly then thanked Zoe for her excellent and moving presentation. He explained that, in his experience, Crohns and Chronic Fatigue Syndrome (CFS) respond best to LDN.

Following a delicious lunch, the audience waited with baited breath for the much anticipated presentation from Dr Jarred Younger from Stanford University in America!

Dr. Jarred Younger
Unfortunately, due to the travel chaos, Dr Younger had to talk to the audience via Skype video link, and after a few technical hitches, the audience were able to see him clearly on screen. Dr Younger has been researching the benefits of LDN for those with Fibromyalgia and his preliminary findings are looking extremely promising. He has been investigating the effects of LDN on the microglial cells in the brain and the spinal cord.

Dr Younger is proposing that these cells are constantly throwing out inflammatory markers in those with Fibromyalgia and that these patients may also have an exaggerated response to opioids and cortisol. LDN decreases the excitability of these microglial cells and therefore may be beneficial to those with Fibromyalgia.

At the time of press, Dr Younger was continuing to analyse the results of his study in greater detail. We will be able to bring you his indepth results as soon as his research paper is published.

Maija Haavisto - CFS
Next to address the audience was Maija Haavisto from Finland. Maija had kindly agreed to talk to the conference about her experiences of LDN and Chronic Fatigue Syndrome (CFS). She explained that she had struggled to get help for her condition as CFS is simply not recognised in Finland, and that she had tried numerous medications in a bid to ease her symptoms. Eventually, Maija began taking LDN and found that her symptoms improved greatly, her pain decreased and her energy levels improved greatly. Maija has written a book called Reviving The Broken Marionette about her experiences.

Dr Gilhooly thanked Maija for taking the time to visit us in Glasgow to share her LDN story. He then continued to welcome Christine Fowler, who had agreed to speak to the conference about her experiences of CFS and LDN.

Christine Fowler - CFS
Christine explained that she was a P.E teacher and that she had struggled for years with CFS. She admitted that she had had several spells off her work and that she had eventually met Dr Gilhooly by chance, when her own doctor was not available. Dr Gilhooly had suggested trying LDN and Christine decided to give it a try.

Unfortunately, on this occasion, Christine stopped taking LDN after a few weeks and decided to try other options. Over time, her condition worsened, she had no energy for her family or to see her friends. Thankfully, she decided to give LDN another try and this time, she noticed a big improvement. Gradually, Christine has felt her energy levels increase and her pain levels decrease. She feels that she has got her life back.
Dr Gilhooly thanked Christine for her inspiring talk and joked that she must be getting better, as she was now able to keep up with him as he speedily walked down the corridors at his clinic! (and not many people can do that!)

Dr. Tom Gilhooly
Finally, nearing the end of a highly interesting day, Dr Tom Gilhooly led the conference through his thought provoking presentation on CCSVI (Chronic Cerebro-spinal Venous Insufficiency). Dr Gilhooly explained that there is growing evidence that CCSVI may be linked to MS. He explained that Professor Paolo Zamboni, a vascular specialist from Italy, had published a research paper that suggested there may be links between CCSVI and MS.

This was being further investigated, on a larger scale, by the University of Buffalo in New York. Dr Gilhooly explained that CCSVI causes the blood to have difficulty draining away from the brain, and this causes iron to leak from the veins into the brain. This has been shown to be the case in a significant amount of MS patients in Dr Zambonis research. It is thought that this iron build up may cause damage to the brain.

Dr Gilhooly explained that The Essential Health Clinic in Rutherglen was now providing appointments for screening for CCSVI, which can be diagnosed by a specialist doppler scanning machine, and treated with venoplasty (a balloon is inserted into the vein and inflated to hold the vein open). He explained that his clinic has been inundated with calls regarding this and that the first round of appointments had all been filled. The Essential Health Clinic plans to operate a waiting list for those wishing this screening. This waiting list will be opened on wednesday 5th of May, and those interested will be required to pay a 100 deposit to be put on the waiting list. This is then deducted from the cost of the eventual screening or refunded to the person should they wish to be removed from the waiting list. Those interested can find information on this condition and can be placed on the waiting list by visiting www.essentialhealthclinic.com.

Dr Gilhooly concluded the 2010 LDN Conference by thanking all those that had attended, the speakers who had provided us with such an informative experience, and also praising the work of groups such as The LDN Research trust and LDN Now (a political pressure group that have been petitioning the British Government to make LDN available to all, and are now collecting signatures for their European Petition- click here to sign the petition).

He encouraged those who were requiring anymore information on LDN or where to find a GP to prescribe it, to contact Linda Elsegood from The LDN Research Trust. Linda has helped numerous people find LDN and get the help they so badly need. Please visit www.ldnresearchtrust.org for more information.

Finally, throughout the day, award winning TV producer/director Jill Marshall and her team were filming their documentary on LDN. Keep an eye out for Jills documentary on TV, you may be famous!

Video footage from the 2010 LDN Glasgow Conference will be available soon
http://www.bigonglasgow.com/2010/2010-ldn-conference-report-79509