Journal of IiME Volume 2 Issue 1 www.investinme.org 2 22 3 33 4 44 8 88 Inside This Issue E EEdddiii tttooorrriiiaaalll F FFrrrooommm ttthhheee CCChhhaaaiiirrrmmmaaannn B BBiiiooommmaaarrrkkkeeerrrsss fffooorrr CCCFFFSSS I IImmmppprrrooovvveeeddd RRReeennnaaalll FFFuuunnncccttt iiiooonnn i iinnn CCCFFFSSS///MMMEEE PPPaaattt iiieeennntttsss wwwiii ttthhh I IIVVVIIIGGG 9 99 1 11777 2 22000 2 22444 3 33333 E EExxxpppeeerrriiieeennnccceeesss ooofff CCCaaarrreee iiinnn I IInnnsssttt iii tttuuuttt iiiooonnnsss wwwiii ttthhh SSSeeevvveeerrreeelllyyy--- III lll lll P PPeeeooopppllleee wwwiii ttthhh MMMEEE M MMEEE iiinnn EEEuuurrrooopppeee M MMEEE///CCCFFFSSS aaasss aaa M MMiii tttoooccchhhooonnndddrrriiiaaalll DDDiiissseeeaaassseee T TThhheee rrrooollleee ooofff iiimmmpppaaaiiirrreeeddd c ccaaapppiii lll lllaaarrryyy bbblllooooooddd fff lllooowww iiinnn MMMEEE E EEsssssseeennnttt iiiaaalll IIInnnvvveeesssttt iiigggaaattt iiiooonnnsss fffooorrr P PPeeeooopppllleee wwwiii ttthhh MMMEEE///CCCFFFSSS A AAlllsssooo iiinnncccllluuudddiiinnnggg ttthhheee III iiiMMMEEE I IInnnttteeerrrnnnaaattt iiiooonnnaaalll M MMEEE///CCCFFFSSS CCCooonnnfffeeerrreeennnccceee 2 22000000888 ssseeecccttt iiiooonnn Email: info@investinme.org It is one year since we produced the first Journal of IiME as a means of providing a combination of biomedical research, information, news, views, stories and other articles relating to myalgic encephalomyelitis (ME/CFS) – basically, a broad spectrum of information on ME/CFS. Our aim was to distribute this for free four times a year. Due to the current size and financial limitations of IiME we can only provide a snapshot of the wealth of experience which already exists and continues to increase and we currently are only able to produce two copies a year. But we hope to change that in the future. However, this will be our third Journal and, coinciding as it does with the 3rd IiME International ME/CFS Conference, we can look at the last two years and begin wondering if a sea change is occurring in the perception of ME based on good science, objective data, effective advocacy and a realisation (finally) from government and healthcare organisations (albeit forced by pressure from patient groups and researchers) that obfuscation and systemic bias are no just or effective way to provide healthcare. Diagnosis is at the heart of the problems surrounding ME and diagnostic criteria are critical. One of the IiME’s aims was to campaign for such a diagnostic test and this may well be achievable before long. Last autumn’s Journal of IiME reported on work by Dr Sakudo at Osaka university using Visible and nearinfrared (Vis-NIR) spectroscopy on serum samples. Dr Sakudo stated that as ME can only currently be diagnosed by skilled doctors then the diagnosis requires experience and sophisticated techniques - and even with a skilled doctor, it takes a long time to reach a final clinical diagnosis. Vis-NIR spectroscopy would enable an objective and rapid diagnosis and would not require experience and skill. Dr Sakudo returns this month with an article as commentary on the ppossible application of visible and near-infrared spectral patterns in serum to provide emerging clue to biomarkers for chronic fatigue syndrome. Dr Tae Park runs his own CFS clinic in Seoul, Korea and he attended the Invest in ME International ME/CFS Conference in London in May 2007 and wanted to return this year to briefly speak at the conference (which we will try to fit in the plenary section or as a poster presentation). Dr Park has supplied another short article on improved renal function based on treatment with IVIG. The Journal of IiME Volume 2 Issue 1 From Invest in ME Sidsel Kreyberg is a Norwegian doctor who has specialised in pathology and is head of the ME Registry in Norway. Dr Kreyberg has conducted a small survey of those caring for the severely ill ME patients. Her article provides a good insight into the difficulties in caring for this group of ME patients in institutions. The normal rules of rehabilitation do not apply to ME patients and it is important to take the lead from patients. The patient experiences are very important and should be listened to. Eight institutions which had cared for severely affected ME patients were contacted. The objective was to obtain “hands-on” experience of how one could give adequate services in the future for severely ill ME patients, without (continued on page 3) Disclaimer The views expressed in this Journal by contributors and others do not necessarily represent those of Invest in ME. No medical recommendations are given or implied. Patients with any illness are recommended to consult their personal physician at all times. Invest in ME (Charity Nr. 1114035) Page 2/34
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