tag:blogger.com,1999:blog-22576999.post2076200917154933493..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Immune System Abnormalities in ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-22576999.post-72357522508280567272020-04-10T13:49:19.691-04:002020-04-10T13:49:19.691-04:00amazingamazingDominickhttps://www.blogger.com/profile/16892760646468170505noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-38656266502812673722020-03-15T11:07:01.773-04:002020-03-15T11:07:01.773-04:00Agreed!Agreed!Kate Jay-Rhttps://www.blogger.com/profile/00949531996279399373noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-62429110056076241782020-03-15T11:01:56.382-04:002020-03-15T11:01:56.382-04:00I know some do say that...but it's not what ac...I know some do say that...but it's not what actually happened. Our CDC just came up with its own name to what they decided was a new "mystery" illness when an outbreak occurred in the 80's in Nevada. They didn't realize the UK had already defined the same illness as ME - just wasn't on the radar here. Unfortunately, CFS has caught on worldwide now - wish it had been the other way around!<br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89332938189127294482020-03-14T18:03:23.197-04:002020-03-14T18:03:23.197-04:00Yes ME/CFS used here in the UK too by the services...Yes ME/CFS used here in the UK too by the services. And yes, they say CFS was coined to downgrade ME but the two seem to be used interchangeably now.Kate Jay-Rhttps://www.blogger.com/profile/00949531996279399373noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59496892914728053712020-03-14T16:13:16.621-04:002020-03-14T16:13:16.621-04:00Ugh, Kate...unfortunately, our government saddled ...Ugh, Kate...unfortunately, our government saddled us with Chronic Fatigue Syndrome (CFS - which is why I use ME/CFS here) - everyone hates the name but that's what most doctors and patients recognize. ME or at least ME/CFS is beginning to catch on among patient groups, but it's still mostly CFS in the mainstream.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-49212141372961454742020-03-14T07:39:09.821-04:002020-03-14T07:39:09.821-04:00Thanks Sue. It's strange but in some internat...Thanks Sue. It's strange but in some international groups I have posted that I have M.E. and some people from the US have said 'what is ME?' I understand that it's also known as something else there but can't for the life of me remember the initials!Kate Jay-Rhttps://www.blogger.com/profile/00949531996279399373noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19800712677801276452020-03-12T18:16:40.093-04:002020-03-12T18:16:40.093-04:00Yes, I am in the US (state of Delaware). Yes, that...Yes, I am in the US (state of Delaware). Yes, that will be a big breakthrough, when we finally have biomarkers doctors can test for!!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-72956293875794917482020-03-12T16:57:16.564-04:002020-03-12T16:57:16.564-04:00Many thanks Sue. That's very interesting what...Many thanks Sue. That's very interesting what you say about a positive ANA which is proof enough that something is going on with ME/CFS (so many people don't believe it exists as they say there are no blood tests or definitive markers). Are you in the US? I'm sure I read where you were from on your blog but foggy brain has forgot. I can check after I have posted this! I'm in the UK anyway. Best wishes :)Kate Jay-Rhttps://www.blogger.com/profile/00949531996279399373noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48862371461452058652020-03-12T16:48:21.062-04:002020-03-12T16:48:21.062-04:00Thanks for your comment, Kate. Your positive ANA i...Thanks for your comment, Kate. Your positive ANA is very common for those with ME/CFS - most of us have that or at least a borderline result. We don't get the flu vaccine for all the reasons described in this post. We did one year (with the H1N1 scare), and I crashed for a month from it. Since I haven't caught the flu in the 18 years since getting ME/CFS, and my son has only had it once in his 16 years with it, I figure we are pretty safe! Hoping it is the same for coronavirus. Things are heating up quickly here in the US.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-65750601564956127452020-03-10T10:25:36.466-04:002020-03-10T10:25:36.466-04:00Very interesting. Thanks for this. I have been wo...Very interesting. Thanks for this. I have been wondering about the immune system response and this explains the conflict between immune system suppression and going into overdrive. I always knew from young adulthood or earlier that to get a cold as other people describe it was something of a misnomer for me. It was never 'just a cold' but was more like how others would describe flu. Then in my mid thirties I suffered pleurisy twice in the same year (although I never knew whether it was bacterial or viral because I think they prescribed antibiotics from the off as a precaution.) This seemed to trigger Fibromyalgia pain although I wasn't diagnosed with this until I was 50. However over the years since then the main problem has been the fatigue and I was only diagnosed with ME/CFS last year, even though I've had the symptoms for years. Like you, I have had other chest infections from time to time which have dragged on and after a week they prescribe me with antibiotics and every time I start to feel better within 24-48 hours of taking them (so this is suggesting to me that there is some bacterial/secondary infection). I am now wondering how this implicates us for coronavirus (I did read your blog on this - this is how I found it from a Facebook link!) I know people with AI illnesses such as Lupus and all with MS report getting fewer colds too, although this could also be because - like me - they a) don't go out very much and b) because they are also very vigilant and take active steps to avoid them, just as is now being advised to avoid coronavirus. Oh and recently I have had a positive ANA test although none of the other tests they take in conjunction with this suggested an AI disease necessarily (although didn't rule one out either!)<br />I've not had the flu jab, not for any other reason as I didn't get round to it because even though I am over 60 and have an underlying illness (ME, FM and a history of chest infections) I wasn't considered to be in one of the NICE guidelines 'at risk' groups. I could have paid for one privately at the pharmacist but as I say I just didn't get round to it.<br />On a completely different subject, one of my most distressing symptoms which I've recently learned is part of Autonomic NS Dysfunction is Hyperhidrosis (excessive sweating) which for me is triggered more in the cold weather and is exacerbated (now) by anxiety Kate Jay-Rhttps://www.blogger.com/profile/00949531996279399373noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14434422699706009612020-03-05T12:34:32.630-05:002020-03-05T12:34:32.630-05:00Thank you :)Thank you :)Jennihttps://www.blogger.com/profile/10664877102519401075noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59985642129122077852020-03-05T12:18:27.553-05:002020-03-05T12:18:27.553-05:00Hi, Jenni -
Thanks SO much for letting me know s...Hi, Jenni - <br /><br />Thanks SO much for letting me know some links weren't working! They tend to change over time, and it's hard to keep track with 13+ years of blog posts, so I appreciate the heads up.<br /><br />I not only fixed the links, but updated the entire post and added some additional links to more recent studies on immune dysfunction in ME/CFS.<br /><br />Hope that helps!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59017853881614066802020-03-05T03:45:53.253-05:002020-03-05T03:45:53.253-05:00I tried to look at the Nancy Klimas paper today bu...I tried to look at the Nancy Klimas paper today but both the abstract and full report links are broken. I couldn't find it elsewhere (but my search was imperfect as I don't know the title). Please could you re-add the links?Jennihttps://www.blogger.com/profile/10664877102519401075noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-70191523500602542522019-02-18T18:08:07.264-05:002019-02-18T18:08:07.264-05:00Yes, mitochondrial dysfunction is a part of this d...Yes, mitochondrial dysfunction is a part of this disease, too, though the immune dysfunction is at the heart of the disease and the most likely culprit (often triggered by some sort of infection) that sets off the chain reaction of dysfunctions. It's a complex disease, but it can be effectively treated, one piece at a time.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-32181356047031367482019-02-16T11:41:25.056-05:002019-02-16T11:41:25.056-05:00This is very interesting. I have also read that th...This is very interesting. I have also read that there is a link to a condition called mitochondrial dysfunction, this is where the muscle is unable to uptake energy from the body properly.Anonymoushttps://www.blogger.com/profile/05601883654667795952noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-11526948414760003982017-10-18T17:47:46.883-04:002017-10-18T17:47:46.883-04:00Interesting, though not surprising! I'm not fa...Interesting, though not surprising! I'm not familiar with that particular treatment, but anything that messes with the immune system will cause problems with ME/CFS. I know one guy who developed ME/CFS for the first time after chemo - it can act as a trigger, too.<br /><br />Consider trying some of the immune modulators that are helpful in ME/CFS - they might help you pull out of this relapse and won't hurt your tumor treatment since they don't suppress or stimulate the immune system but help to normalize it. Here's more info: <br /><br />http://livewithcfs.blogspot.com/2014/09/treating-immune-dysfunction-in-mecfs.html<br /><br />And one other treatment that has helped our immune systems normalize more recently:<br /><br />http://livewithcfs.blogspot.com/2017/03/increasing-glutathione-in-mecfs-related.html<br /><br />Good luck! Thanks for taking the time to comment and share your experiences.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36943384900001546982017-10-18T14:02:22.732-04:002017-10-18T14:02:22.732-04:00Hi, I recently had surgery to remove a tumour in ...Hi, I recently had surgery to remove a tumour in the bladder followed by a course of BCG auto immune therapy. The BCG brought on attacks of ME/CFS from which I have suffered for many years.Colin Smithnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-12953882286223978312013-05-23T10:57:15.581-04:002013-05-23T10:57:15.581-04:00You rock girlfriend!You rock girlfriend!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-57368444606783606352013-02-19T21:44:43.228-05:002013-02-19T21:44:43.228-05:00Your brain is working much better than mine for yo...Your brain is working much better than mine for you to have an understanding of TH1/TH2. Although dx with fibromyalgia, I also have high antibody titers to EBV, HHV-6, and CMV. I tried Famvir about a year ago and it gave me terrible nausea. I took it for 6 weeks, took a week off, and tried again for another 2 weeks and then quit. Knew it was probably a Herx reaction but just couldn't take it any longer. Will be talking to my neurologist about getting rid of the viruses and getting her input.Diana S.http://www.nopesticidesmoorpark.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-21453198909094921602012-10-18T17:22:34.377-04:002012-10-18T17:22:34.377-04:00Really useful info Thank YouReally useful info Thank YouElainenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-17702868027952744612012-01-21T05:49:04.128-05:002012-01-21T05:49:04.128-05:00This is really nice information for ME/CFS patient...This is really nice information for ME/CFS patients.Bronchial Asthmahttp://asthma-copd-care.com/asthma.htmlnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14139283623937256552012-01-14T18:37:09.683-05:002012-01-14T18:37:09.683-05:00Upnorth -
Oh that's a shame! I know some pe...Upnorth - <br /><br />Oh that's a shame! I know some people have had good luck with anti-virals. I've been on Valtrex or Famvir for several years - it has helped a little but not a lot. My EBV and HHV-6 numbers are positive but not all that high.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-41504288119897872922012-01-14T11:26:17.743-05:002012-01-14T11:26:17.743-05:00Sue, this particular reaction I had was felt by bo...Sue, this particular reaction I had was felt by both me and my physician to be clearly a "side effect" of the meds that occurs in about 7% of long-term users. That being said, I was probably having some herxing going on as well. Either way, I'm not going on Valtrex again...that was my third shot.<br /><br />However, perhaps we would try an immune modulator like Imunovir, I'll see what my specialist has to say about it next time I see her.upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-10789623711557224512012-01-13T08:27:11.697-05:002012-01-13T08:27:11.697-05:00David -
Yes, that kind of reaction in a healthy p...David - <br />Yes, that kind of reaction in a healthy person is fairly common, too. It's the same mechanism - the immune system is stimulated by the vaccine to create antibodies, which sometimes results in some mild flu-like symptoms (not from the vaccine itself but from your body's response to it). Of course, it;s typically mild and short-lived in a healthy person. I got a flu shot last year that triggered a month-long crash!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-42484404322205905942012-01-13T01:18:39.754-05:002012-01-13T01:18:39.754-05:00Thanks for the excellent post Sue. My brother felt...Thanks for the excellent post Sue. My brother felt awful for several days after getting a flu shot recently, and I told him that is a common occurrence for those with CFS. However, I couldn't explain WHY that happens, so passing along your post to him for more info.Davidhttps://www.blogger.com/profile/10778342601996392913noreply@blogger.com