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Dr Trevor Marshall
Research Team
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Posted: Mon Mar 23rd, 2009 11:40 |
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MP member NickBowler has refocused the Charity he heads in the United Kingdom to move towards collaborating with us to provide medical care and support for people who are trapped in the NHS quagmire.
The charity, EBFAM has just published a brochure, which you can download from
http://AutoimmunityResearch.org/EBFAM.pdf
They also operate a website, with a very nice interface (of which I am jealous).
Great work, Nick!
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barbski
Member in Phase 3
| Joined: | Tue Jul 20th, 2004 |
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| Posts: | 487 |
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Offline
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Posted: Mon Mar 23rd, 2009 15:39 |
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Thank you for this.
However, I took a look at the flyer, and see that it uses a testimonial from a patient who is currently very sick. She is in severe distress both physically and mentally, and is very vulnerable. Indeed, she has been for some time, as some other patients are well aware.
I hope she will soon be more stable and back on the road to recovery. In the meantime, I feel that it's inappropriate for her testimonial to be used.
I have emailed Nick Bowler about this (I phoned him, but he is out of the country at present).
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05)
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Dr Trevor Marshall
Research Team
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Posted: Mon Mar 23rd, 2009 16:32 |
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Barb,
I speak with Jean every few weeks, and, although still struggling, she has improved immensely over the last few years. Before you tear too many shreds off of Nick, you might check with Jean why she approved of Nick writing up her story in this way 
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barbski
Member in Phase 3
| Joined: | Tue Jul 20th, 2004 |
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| Posts: | 487 |
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Offline
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Posted: Mon Mar 23rd, 2009 17:11 |
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Trevor.
Thanks for your reply. I speak to Jean every week, and often speak to her family members too (and she mine). I remember her being much improved for a few months a while back, but for the past year she's been describing what an awful time she's been having, in no uncertain terms - I won't go into details , as she might well consider that personal and not my business to post here.
I know she wrote and approved that piece several months ago now, before some of the worst of her recent and current difficulties.
I have, and had, no intention of 'tearing strips' off Nick - I just pointed out that I don't think now is a good time to be using her story. I hope that changes soon.
I did phone her earlier - I've spoke briefly to her sister but we both have doctor's appts this afternoon (I have to leave for mine in 10 mins), so we'll talk about it more later.
Congratulations to Nick on the rest of the website.
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05)
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Aunt Diana
Moderator
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Posted: Tue Mar 24th, 2009 05:55 |
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| It's beautiful website..I think it is wonderful that Nick Bowler is doing this. What a great and worthy charity.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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appledrummer
Member
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Posted: Tue Mar 24th, 2009 12:40 |
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Fantastic news - great website. I love it Nick, well done. Just what we need around here! Even friends I talk to who do not understand the MP science are now beginning to realise how much of a medical backwater the NHS is becoming.
Keep up the great work!
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Dx Fibromyalgia with chronic fatigue, photosensitivity. Dec 2007 Cut D intake, NoIRs, avoiding light. Stopped taking pulsed Allacin Max after nine months. Soon to start MP.
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BARNEY
Moderator
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Posted: Tue Mar 24th, 2009 15:15 |
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BEAUTIFUL!!!!! LOVE IT!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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