tag:blogger.com,1999:blog-22576999.post3997572355527977651..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: ME/CFS Case Definition - News and ViewsSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-22576999.post-81449657636712064692013-10-14T12:45:54.857-04:002013-10-14T12:45:54.857-04:00Thanks for your reply. I only saw it today. I re...Thanks for your reply. I only saw it today. I really hope I am wrong on this issue but I think we could be being played and we could end up with a worse case definition than Fukuda. All the very best. Sorry to hear you are in crash this week :-( Hope you improve soon <br /><br />PruePruehttps://www.blogger.com/profile/01638431407099299715noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-70261497403944345692013-10-06T01:26:13.730-04:002013-10-06T01:26:13.730-04:00Thank you so much Sue because as a Naturopathic Do...Thank you so much Sue because as a Naturopathic Doctor I don't even have the mental / emotional energy to deal with the politics and traditional medical community regarding CFS/ME after years of being dismissed, mismanaged, misdiagnosed and blatantly disregarded and I know I am not alone in this feeling so I also applaud you for doing this difficult work - that I right now have no energy for and am thankful for your efforts. Heather hkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89823796208145842062013-10-05T17:50:34.042-04:002013-10-05T17:50:34.042-04:00Sue, It is not just names. They are different diag...Sue, It is not just names. They are different diagnoses and identify different patients. Actually CDC does see it differently and does not use ME/CFS. <br /><br />Adding/combining ME with CFS is NOT an achievement (well except for the CFSers, who are mainly PR/politicians and love hijacking ME for the catchy slogans). ME will never be known if we continue to label or combine it as CFS or ME/CFS. <br /><br />The subgroup thing has been another red herring and distraction. They have bloviated for years about subgroups but never do anything to specify or require identification or recognition. Another scam to keep broadening and mixing, then it's oh we need subgroups. <br /><br /><br />Severely disabled classic ME patients have remained in this CFS cesspool for far too long, that is the exact point, and will never get out of this ME/CFS quagmire, other than pronounce and educate that ME is NOT CFS. We cannot be a subgroup<br /> of a contrived misdiagnosis and expect anything to change. Jill McLaughlinnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80304485908715095682013-10-05T13:25:54.466-04:002013-10-05T13:25:54.466-04:00Thanks, Sue, for keeping me up to date. I am a mem...Thanks, Sue, for keeping me up to date. I am a member of the CAA but I wasn't aware of this progress. Must be lost in my emails somewhere. I agree with your assessment with their role with the government.Beatrice Desperhttps://www.blogger.com/profile/10843520699216089362noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-24828948266503696532013-10-05T09:08:19.536-04:002013-10-05T09:08:19.536-04:00Prue -
I share your fears, as do most patients. ...Prue - <br /><br />I share your fears, as do most patients. We have certainly been mistreated in the past. But there is no doubt that progress has been made in recent years, and I am hopeful that it will continue. With those 35 signatories of the letter - all top experts in ME/CFS - the IOM can't possibly ignore or marginalize the real experts...I hope!<br /><br />As for the SOW including CCC as a starting point, remember that the letter signed by the 35 experts came out on the same day as the announcement to appoint IOM so there wasn't a chance for them to consider the letter yet - hopefully, it will be considered as they move forward.<br /><br />I share your concerns but also remain hopeful!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-4118190331887129542013-10-05T09:04:38.938-04:002013-10-05T09:04:38.938-04:00Jill -
I think all patients would agree that the ...Jill - <br />I think all patients would agree that the name CFS is misleading and should be removed completely. I don't think anyone wants ME/CFS as a permanent name - we would all be quite happy to drop the CFS part all together. Unfortunately, the CDC doesn't see it that way - yet. It is a big achievement just to see them add ME to the name - for now. The goal is to do away with the CFS moniker completely. Unfortunately, though ME is a common term in the UK, it is almost completely unknown here in the US so far.<br /><br />Also note that the 35 experts and the Statement of Work both mention sub-categories of the illness - surely, one of those would be for the most severely disabled who clearly have classic ME.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-43683420978154729832013-10-05T06:54:08.449-04:002013-10-05T06:54:08.449-04:00ME/CFS is a scam no matter who promotes it. There ...ME/CFS is a scam no matter who promotes it. There is no disease ME/CFS, it is just made up. This is just to make up an illness called ME/CFS. ME does not require CFS. All of these people/groups work against ME patients. Jill McLaughlinnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-55627747628685677232013-10-04T10:28:55.045-04:002013-10-04T10:28:55.045-04:00Further to yesterday's comment regarding IOM s...Further to yesterday's comment regarding IOM statement of work saying they will include practising clinicians someone today wisely pointed out that the group that came up with the Fukuda cfs included some excellent me/cfs clinicians but their input was outmanoeuvred by the psychs on board and the CDC. I remain concerned...Pruehttps://www.blogger.com/profile/01638431407099299715noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-77690232975626211302013-10-03T19:39:32.019-04:002013-10-03T19:39:32.019-04:00Thanks for writing this succinct overview. I will...Thanks for writing this succinct overview. I will say that reading IOM's Statement of Work they haven't said the Canadian criteria would be the starting point ( which would be great) but that they will look at various criteria, including my country's seriously flawed NICE guidelines.<br /><br />They have said they will include practising clinicians, I am just fearful who and how many, a token one or two?<br /><br />I do think IOM's awful work on Gulf War disease is a great cause for concern. I am worriedPruehttps://www.blogger.com/profile/01638431407099299715noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-67087700756257079652013-10-03T16:24:04.665-04:002013-10-03T16:24:04.665-04:00Thank you, dear Cusp, for your kind words and espe...Thank you, dear Cusp, for your kind words and especially for acknowledging the effort/energy required. Having a tough week and very much appreciated to be appreciated :)Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36093720530774596392013-10-03T15:18:32.471-04:002013-10-03T15:18:32.471-04:00Sue, you have such a talent for collecting, collat...Sue, you have such a talent for collecting, collating and disseminating complex information in a clear and objective way. Thank you for all the hard work this post must have taken. Great work xCusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.com