Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
Discuss the article on the Forums.

ME/CFS - Study Suggests It's Worse than Multiple Sclerosis: Authors Call For More Funding

Discussion in 'Latest ME/CFS Research' started by Cort, Mar 31, 2018.

  1. Cort

    Cort Phoenix Rising Founder

    M.S. of course is one of the most fatiguing and debilitating diseases known but its got nothing on ME/CFS when it comes to whacking a person where it really hurts - their functioning. I've read several times that for many people with MS their most disabling symptom is fatigue.

    That's too bad but ME/CFS patients were actually significantly worse off.....

    I don't recognize these London researchers but they did a great job highlighting how devastating ME/CFS is. ME/CFS patients scored not just lower but significantly lower in almost all the SF-36 functional domains and people with ME/CFS were particularly impaired with their ability to participate in physical activities.

    What a great advocacy tool this study is...

    (The best is still the huge 1996 Komaroff study which found reduced functional status compared to congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502).


    It's great to see a more up to date study, though.

    cigana, Neunistiva, nandixon and 13 others like this.
  2. Dolphin

    Dolphin Senior Member

    It's an interesting study alright. It's from the UK biobank team.

    From what I have seen I think that ME/CFS is less likely to cause fatalities, at least directly, than multiple sclerosis.
    Simon, Skycloud and Mel9 like this.
  3. perrier

    perrier Senior Member

    Many suicides from Cfs
    Due to unbearable unrelenting symptoms
    preea, CatNap, lauluce and 8 others like this.
  4. ebethc

    ebethc Senior Member

    what is the suicide rate from CFS?
    lauluce likes this.
  5. alkt

    alkt Senior Member

    I really don't like research papers based on self assessment forms there is way to much room for bias. you only have to see the mess that is pace . any other research paper based on self report forms will be perceived to have the same shortcomings.
    pattismith likes this.
  6. Skycloud

    Skycloud Senior Member

    I agree with this.

    However, this research team are biomedical researchers who are not switching outcomes etc so taking the subjectiveness into account I think it's still useful.

    We can expect more research from the UK ME/CFS Biobank team in the future. I think they're doing a genetics study. There was a paper on prevalence of ME/CFS in the UK from Nacul and others, and a publication in the Journal of Health Psychology last March for example. The biobank provides samples to researchers internationally. This is their website if interested:


    edit - addition and grammar
    Last edited: Apr 1, 2018
    alkt likes this.
  7. Hopeful1976

    Hopeful1976 Senior Member

    I'm fed up. Losing hope. Worse than ms. I do not see an end to this. I really don't. I know this is it for me. They haven't found a cure for ms and that has heaps of funding - what hope for me then? I think I'm going to come away from all the websites and just accept my situation as it is; never ending and cruel.
    preea, panckage and ebethc like this.
  8. BadBadBear

    BadBadBear Senior Member

    Rocky Mountains
    I have a friend that has progressive MS come work for me on some house cleaning projects, she has a ton of energy and stamina despite having a hard time getting around & not being able to use one side of her body much. Could not believe how much she kicked my butt energy wise. And I'm not even severe CFS/ME, just mild/moderate. She is still able to work, get up and down from working at floor level, etc.

    I know not all are like this, but it did put it right in my face how affected I am, even though I try to count my blessings.
    preea, Dolphin, perrier and 4 others like this.
  9. Cort

    Cort Phoenix Rising Founder

    I think we can say that the average person with ME/CFS is more limited than the average person with MS but that MS is more deadly...
    nandixon, percyval577 and Mel9 like this.
  10. Cort

    Cort Phoenix Rising Founder

    Which makes sense given these findings. If people with ME/CFS are significantly more limited than people with MS - which is considered one of the most fatiguing conditions - then a higher rate of suicide would not be surprising since quality of life suffers so much.
    preea, Dolphin, perrier and 2 others like this.
  11. Cort

    Cort Phoenix Rising Founder

    I certainly agree that it would be much better to have biomarkers we could use to assess disease progression or regression but lacking those there is a place for well produced (not the well-produced part) self report studies. Otherwise there's no way to assess many symptoms. How would you assess the effectiveness of pain drugs for example without self-report tests or the presence of fatigue. Self report scores have been crucial in showing that exercise for instance has such a profound effect on symptoms. They're not perfect for sure but they're needed and frequently used.

    The main problem with the PACE study, as I understand, was not the fact tself-report scoring was used but that the researchers changed the criteria in midstream - in every case making it easier for the trial to look like it was a success. Basically they messed with the self report scores. Many, many studies use self report - but only the PACE trial has gotten itself into the kind of trouble it has.
    L'engle, alkt and Mel9 like this.
  12. Cort

    Cort Phoenix Rising Founder

    As I remember a couple of studies which have not found increased death rates from ME/CFS have found increased rates of suicide. I don't know how increased they are though.
  13. Cort

    Cort Phoenix Rising Founder

    Don't give up hope! I think MS may be different in a way that makes it much harder to fix than ME/CFS. That's because the neurons in the brains of MS patients are actually damaged. There's no sign that I know of real physical damage to the brain or in ME/CFS. It may be more that the signaling pathways have gone bonkers. It's a lot harder to fix damaged neurons than it is to fix signalling pathways...

    I had an experience while taking transfer factor years ago of suddenly being transported back 15 years into my old self. It was like I was back! The drug didn't work after a time but that convinced me that the healthy me was still in there.

    Plus yes MS has gotten a lot of funding but note that ME/CFS has never gotten that chance. These are two different diseases we really can't compare them. We have no idea what would happen if ME/CFS got that kind of funding. It may be that if it did we would find that ME/CFS is actually a lot easier to fix than MS. .
    preea, Tally, Dolphin and 8 others like this.
  14. Cort

    Cort Phoenix Rising Founder

    One interesting sidelight- =Rachel Riggs was misdiagnosed with MS but then kicked butt on Copaxone - an MS drug - she did better than MS patients on it- much better. Copaxone is not supposed to effect fatigue but it removed her fatigue (!). It temporarily basically cured her ME/CFS. Could it be that some MS drugs could work better in ME/CFS than they do in MS?

    Rachel told me that Ron Davis is looking into the Copaxone link.
    junkcrap50, Tally, sb4 and 5 others like this.
  15. ljimbo423

    ljimbo423 Senior Member

    United States, New Hampshire
    Interesting how it works....

    Copaxone (Glatiramer Acetate) (GA)-


    Mel9, Moof, pibee and 4 others like this.
  16. Raven Mom

    Raven Mom

    Ontario, Canada
    I, too, have a dear friend with M.S. who outstrips my yearly energy levels each and every month...sometimes, possibly every week. (To be fair, she was double the average dynamic-type person to start with...) She was an actress and puppeteer when her mobility became strenuous and untrustworthy so she took up play-writing and was able to be a Writer in Residence at a university. She then took up writing plays with roles for herself in a wheelchair and began acting again. Eventually, she found her power and returned to the stage in roles with her canes or chair (she played Richard iii, for instance). This has evolved into a director role in a theatre group she co-founded called 'Sick and Twisted' ...loving humour. She/her peers in the theatre community refer to themselves as 'crips', too...'crip humour', etc. {see Note below*}

    When I was trying to 'come out' to my friends as a person with M.E., this woman wrote that she saw my disadvantage because of the inherent invisibility of my symptoms and the stigma of malingering/mental illness. I wept great healing tears when I read her reply as she so instantly and compassionately understood my reticence to 'come out' and struggles to receive support she has in abundance.

    {Note*: If anyone in this group wants to work.....slowly, slowly and incrementally....towards developing an M.E. cartoon of some kind?, pls msg me∼ * ∼ * likewise if there's something like this I'm unaware of? (I'm not naturally funny but --following this example from primarily mobility-based-disability communities-- would like to cultivate a little more laughing at my travails and sharing with others who might enjoy the same....Could be just through blog posts or group thread here? nothing fancy per se. I'd likely be most useful contributing image content rather than punch-line but will give anything worthwhile a go once....!)}
    Mel9, Sidereal, Moof and 6 others like this.
  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    You can contact @ballard. See her work at http://www.cfsgraphics.com/home.html. (Click on graphics 1 & 2 to see her cartoons.)

    I found another thread with additional cartoonists: http://forums.phoenixrising.me/inde...and-illustration-resources.52198/#post-911514
    Mel9, Dolphin, alkt and 1 other person like this.
  18. Raven Mom

    Raven Mom

    Ontario, Canada
    dear @CFS_for_19_years (with beautiful plumage & biscuits...).

    thankful for these links---they're wise and powerful. important to get them out in the wide world! I can still remember the first funding graph I saw and the sliver of funding for M.E./C.F.S. compared to bars that rose like sky-scraping office towers for other illnesses. but to add to graphic clarity a witty, political humour in these.... is brilliant.

    I'll try to sketch up an example of the more small-scale, dialect-specific kind of humour I more want to play with (eventually...!!). with less intention for advocacy and more the liberating, life-affirming humour that arises from the bizarreness of situations that you find yourself in when so monumentally not up to tasks--- the implausibility, the wacky solutions that seem viable in the moment.

    appreciate you answering∼ * ∼ *
    Mel9, Moof, perrier and 2 others like this.
  19. Mel9

    Mel9 Senior Member

    NSW Australia
    I would love to see these (if you have had the energy ?)

See more popular forum discussions.

Share This Page