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In writing any article for the Dumfries & Galloway ME Network, I can only start by thanking the group for doing me the signal honour of appointing me as your Patron. Although I was assured that this position would not cause any increase in my workload, I trust that members of the group will not hesitate to contact me if they feel I can do something – anything – different to highlight the issues which so affect you as sufferers of, or carers of sufferers of M.E.
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I spent some time recently with a self help group in Wigtownshire all of whose members suffer from fibromyalgia. Apart from the lack of ‘brain-fog’ as a symptom, I could have been at an M.E. group as there was so much in common. And I’m not just talking about symptoms here – I’m talking about medical reaction to the disease and the indifference of the Benefits Agency when assessing sufferers as well.
It all served to underline to me the fact that these diseases are not going to go away just because ‘the system’ ignores them. They are on the increase, as we all know, and the day is surely dawning when that has to be recognised within the mainstream NHS and by the Medical Research Council.
Then we will have achieved the significant step forward that we continue to work towards. Keep up the good work. |
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A Word from Alex Fergusson MSP Patron of D&G ME Network
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Fibromyalgia Dr Vance Spence. MERGE An exchange of an e-mail between Dr Spence and Norma. |
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Q. Alex Fergusson met with a group of FMS sufferers recently and said apart from the lack of Brain fog he cold have been at an ME group meeting. A. There is a lot of overlap with ME/CFS . We have done some work ourselves and found that FMS subjects did not have the sensitivity to acetylcholine (ME patients are unusually sensitive). ME/CFS patients had normal levels of the vasoconstrictor Endothelin-1 but FMS patients had increased levels. So it’s a diagnostic mess. |
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Q. How is it diagnosed? A. Like ME on clinical grounds. Q. Is it a type of ME/CFS? A. I think you might say it is a type of CFS but some FMS patients do not like this association. Q. Have any patients with FMS been used in any of the trials—like the one Dr Gow and Dr Kerr have been running? A. No I don't think that FMS patients have been used. Q. Are there any clues as to if FMS is linked to faulty genes that have been affected by a virus? A. Not that I am aware of but gene studies are fairly new.
There will be more on Fibromyalgia in the next issue . We would love to hear from any FMS sufferers. www.myalgia.com/overview.htm www.mayoclinic.com/health/fibromyalgia/DS00079 |