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

[Cort]

These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society. The authors

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).

https://www.ncbi.nlm.nih.gov/pubmed/8873490)

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

Pharmacoecon Open. 2018 Mar 13. doi: 10.1007/s41669-018-0071-6. [Epub ahead of print]
Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic FatigueSyndrome Compared with People with Multiple Sclerosis and Healthy Controls.
Kingdon CC1, Bowman EW2, Curran H2, Nacul L2, Lacerda EM2.
Author information

Abstract
BACKGROUND:
People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to struggle to have their condition recognised as disabling in the face of public and professional prejudice and discrimination.

OBJECTIVE:
The aim of this study was to compare the functional status and well-being of people with well-characterised ME/CFS with people with multiple sclerosis (PWMS), as well as healthy controls (HCs).

METHODS:
In this cross-sectional study, we used data collected as part of the UK ME/CFS Biobank to compare actual participant scores from the Medical Outcomes Survey Short Form-36 v2™ (SF-36v2™) between groups, as a proxy for impact of disability, and from a bespoke questionnaire seeking data on employment and income.

RESULTS:
People with ME/CFS scored significantly lower than PWMS or HCs in almost all SF-36v2™ areas. Prominent were lower scores for people with ME/CFS in the Physical Component Summary and Role Physical and Social Function domains, while the smallest differences were seen in the Mental Health domain. Responses to the bespoke questionnaire indicated that people with ME/CFS in this study work fewer hours and have lower incomes compared with people in the other two groups.

CONCLUSIONS:
Using SF-36v2™ scores as a proxy, people with ME/CFS were measurably more disabled than PWMS or HCs in this study population. Furthermore, employment and income data are consistent with loss of functional status. These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society.

 

[Dolphin]

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.

 

[perrier]

Many suicides from Cfs
Due to unbearable unrelenting symptoms

 

[ebethc]

Many suicides from Cfs
Due to unbearable unrelenting symptoms

what is the suicide rate from CFS?

 

[alkt]

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.

 

[Skycloud]

I really don't like research papers based on self assessment forms there is way to much room for bias.

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:

http://cureme.lshtm.ac.uk

The UK ME/CFS Biobank is run by the CureME research team at the London School of Hygiene and Tropical Medicine and is overseen by a Steering Committee comprising of patient/carer representatives, academics and charity stakeholders.

edit - addition and grammar

 

[Hopeful1976]

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.

 

[BadBadBear]

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.

 

[Cort]

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.

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...

 

[Cort]

Many suicides from Cfs
Due to unbearable unrelenting symptoms

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.

 

[Cort]

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.

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.

 

[Cort]

what is the suicide rate from CFS?

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.

 

[Cort]

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.

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. .

 

[Cort]

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.

 

[ljimbo423]

Rachel Riggs was misdiagnosed with MS but then kicked butt on Copaxone

Interesting how it works....

Copaxone (Glatiramer Acetate) (GA)-

GA treatment induces an in vivo change of the frequency, cytokine secretion pattern and the effector function of GA-specific CD4+ and CD8+ T cells, probably by affecting the properties of antigen-presenting cells such as monocytes and dendritic cells.

As demonstrated extensively in animal experiments, GA-specific, mostly, T helper 2 cells migrate to the brain and lead to in situ bystander suppression of the inflammatory process in the brain.

Furthermore, GA-specific cells in the brain express neurotrophic factors like the brain-derived neurotrophic factor (BDNF) in addition to anti-inflammatory T helper 2-like cytokines.

https://www.ncbi.nlm.nih.gov/pubmed/17531858

Jim

 

[Raven Mom]

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.

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....!)}

 

[CFS_for_19_years]

{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....!)}

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

 

[Raven Mom]

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]

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∼ * ∼ *

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