# Lots of full research papers by the CFSRF are now available on their revamped website



## tk (Apr 4, 2005)

(May be reposted but only in its entirety)I would like to draw people's attention to the fact that the CFS Research Foundation (CFSRF) have revamped their website (which up till recently was basically just a couple of webpages).The site is now also available at two addresses:http://www.cfsrf.comAndhttp://www.cfsresearchfoundation.org.ukThe thing I found most exciting about the revamped site is they have put up a lot of their full research papers.It can sometimes be frustrating just reading abstracts of research papers, as one can often want to read more about what the authors did, the results they found, their thoughts about what the results mean (e.g. tying them in with other studies), etc: well now one has the chance, with lots of the CFSRF's full papers available at:http://www.cfsrf.com/Publications.htmFor example, if one wants to read about the Gene Expression study that got a lot of publicity in July and August i.e. "Gene expression in peripheral blood mononuclear cells (PBMC) of CFS patients". Kaushik N, Fear DJ, Richards SC, McDermott CR, Nuwaysir EF, Kellam P, Harrison TJ, Wilkinson RJ, Tyrrell DA, Holgate ST, Kerr JR. Journal of Clinical Pathology / Molecular Pathology 2005;158(8):826-32.. it's available to download there.The site also has a link to a review on the New Scientist website on thisresearch: http://www.newscientist.com/channel/health/mg18725093.700One can read about their current and future plans at http://www.cfsrf.com/research-current.htmwhich includes a link to their latest newsletter http://www.cfsrf.com/pdf/Newsletter-10.pdfThe site also contains an "Appeal for funding by The Rt Hon The Lord Bingham of Cornhill, Chairman of the Trustees" http://www.cfsrf.com/pdf/Appeal.pdfThis also gives details of their plans and explains gene expression research a bit more.Gene expression research by all accounts looks like a very powerful tool - it is like doing thousands of experiments in one go. Billions were spent on the Human Genome Project so it's great that people with ME/CFS are able to benefit from this knowledge with ME/CFS research studies in the genomics area.One of the most exciting things I find about the CFSRF's plans is that they are doing prospective studies - following people with certain infections over time. I'm only a lay person so I will try to explain this as I understand it:Many people with ME/CFS do not know what infection (if any) started their illness. After a while it can be difficult to try to work back to find out which infection started a person's illness as existing tests can be imprecise.For example, the CFSRF's (non gene expression) research on Parvovirus B19 a few years ago found this was the case for this infection.The interesting thing about Parvovirus B19 is when they did a prospective study involving that infection, they found (in a small study) that the CFS-type illness that developed could be effectively treated (with intravenous immunoglobulin therapy):Successful intravenous immunoglobulin therapy in 3 cases of parvovirus B19-associated chronic fatigue syndrome. Kerr JR, Cunniffe VS, Kelleher P, Bernstein RM, Bruce IN. Clin Infect Dis. 2003 May 1;36(9):e100-6. Epub 2003 Apr 22. http://www.cfsrf.com/pdf/ivig.pdfSo their prospective study of Parvovirus B19 patients using gene expression will hopefully help spot the patterns of somebody whose illness was initiated by Parvovirus B19. People recognised in this way might then be able to try intravenous immunoglobulin therapy which might help them recover.There seems to be a school of thought that it doesn't matter what the initial infection was, it all leads to the one illness. However there is another school of thought that the illness is heterogeneous and that the different initiating viruses may play a part in this heterogeneity.The CFS Research Foundation's research will help test this hypothesis as they will follow patients with different infections incl. enteroviruses. If it is found that there are differences, different approaches could be tried on different subgroups - for example, an anti-enteroviral drug could be tried on patients whose illness followed an enteroviral infection. Perhaps if such a treatment was tried on all CFS patients, the results would be disappointing. But trying such a treatment on the specific subgroup associated with enteroviral infection might be more promising.This subgrouping by infection might be useful to help try to work out why some people seem to respond to other (non anti-viral) medications in different ways to others.


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## tk (Apr 4, 2005)

Following on from the message I sent to this and some other lists and boards onSaturday (see below), somebody posted the following on an announcement liston Sunday:>>Hi,>>Just to say that you can donate to the CFSRF at _www.givenow.org_>(http://www.givenow.org)>>If you want/are able to give you'll probably do best by typing> in cfs,>chronic fatigue syndrome didn't get me very far.>>Regards,<name>-----------------------------Here's a direct link to the page for the CFS Research Foundation:http://tinyurl.com/cld93i.e.https://secure.givenow.org/charitysearch/Ch...rc=CAF&ID=64337&SID=146003&OrgName=CFS+Research+Foundation&GUID=[This is useful information if you want to give or would like somebody elseto give as it is easier for a lot of people to give online. This isespecially true for people not in the UK as getting bank drafts/similar inother currencies can be messy and costs extra]Hope people won't mind me posting this - didn't intend to send two messageson this at this time.


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## M&M (Jan 20, 2002)

No, I don't mind that you post it at all. In fact, I think it's a good idea!One of the most important functions of this forum is to help get reliable information into the hands of patients and their families. And I think the CFSRF is a big help in that department!


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## tk (Apr 4, 2005)

Thanks for that. Sometimes there can be negativity on the internet so nice to get positive comments too.


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