ME research of note: Contrasting ME versus CFS or 'CFS/ME' by Leonard A. Jason et al

Hello,

Although this study was first published in 2013 i have recently come across it and see it as valuable so thought i would share!

Well worth a read of the summary at the below link!

If you have been given a diagnosis of CFS or CFS/ME this certainly doesn't necessarily mean you don't have Myalgic Encephalomyelitis..

Currently in the UK CFS, CFS/ME and ME are used synonymously by most doctors as if they are the same illness.

There are a number of criteria worldwide for diagnosing ME and CFS, some of which are more specific to classic ME than the broader CFS. But in the UK a very broad non-specific criteria is currently used which results in a lot more people being given the diagnosis of CFS than it is thought would be If the criteria for ME exclusively were separate.

Most doctors think CFS is just another name for ME and don't realise any of the differences.

Research aims to improve the situation to clarify the differences which is important to help ensure that future research results are more conclusive, definitive and relevant.

Whilst these different conditions are researched as if they are the same illness, research results will continue to produce inconclusive, nonspecific and often conflicting results.

CFS is increasingly recognised to be not a distinct diagnosis but an umbrella term under which a number of fatiguing illnesses are currently housed, all of which are of different causes, and just one of these is myalgic encephalomyelitis, but the other conditions have yet to be individually classified. Research efforts are ongoing to try to identify sub-groups of CFS which have characteristic clinical presentations, symptoms - and in some cases at least biomarkers - to eventually classify these as separate conditions.

Hopefully myalgic encephalomyelitis will be the first to be fully recognised as distinct from CFS and classified separately, as ME already has distinctive clinical features, specific biomedical abnormalities, and actually used to be known as a distinct disease entity before it was very unfortunately subsumed under the CFS umbrella which has made research very difficult and not helped patients.

Anyone with a diagnosis of CFS, CFS/ME or ME should be encouraged by any efforts to differentiate these conditions, as this is what will ultimately lead to conclusive, repeatable, clinically helpful research findings which will help lead the way to proper universal recognition of Myalgic Encephalomyelitis as a distinct multi system disease and to most importantly of all effective medical treatments aimed at the underlying disease process! The same applies to the other conditions currently mixed under the CFS umbrella - yet to be fully sub-grouped and researched individually - which an understanding of as distinct clinical entities will also lead to more useful research and treatments.

This study is one small step, but it's one that i for one am very glad is being taken, alongside other related studies with similar aims!......

"Contrasting chronic fatigue syndrome versus myalgic encephalomyelitis/chronic fatigue syndrome

Leonard A. Jason, Abigail Brown, Meredyth Evans, Madison Sunnquist, Julia L. Newton

Fatigue: Biomedicine, Health & Behavior

Vol. 1, Iss. 3, 2013"

ABSTRACT IS AVAILABLE AT BELOW LINK AND YOU DON'T NEED TO BE ABLE TO HAVE ANY EXPERIENCE OF READING RESEARCH RESULTS TO UNDERSTAND:

dx.doi.org/10.1080/21641846...

Just before I go - anyone who has read this please do follow this brand new community, to help us get on our feet, and if you can write a post too, even better! Even a simple hello is fine! Or if you'd rather just follow us and not post at first that's fine too!

We'd love to see anyone here with a diagnosis of ME or CFS, an interest in or question about ME or CFS, or who's looking for support or chat, friendship!

Best wishes,

Starbys :-)

10 Replies

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  • Dear Starbys, Bill Thielen here, newly signed on to HealthUnlocked, from California. Thanks for the welcome to what you described as a new ME forum (separate from this posting). I'm having trouble navigating access, including the Leonard Jason research. Can't seem to open it. Maybe my six year old iMac is the problem, dated Flash. More later if I can gain entrance into the promise land.

  • Hi Bill,

    Great to hear from you!

    Yea, this is a new ME forum which I set up myself because I discovered Health Unlocked (HU), and thought it would be good to have a forum dedicated to ME here. Because HU also houses forums for other conditions and as many people with ME and CFS often have other medical conditions as well I thought it would be great to be able to access forums for ME and other conditions all in one place, as visiting several different websites for different forums of different conditions can be too exhausting when you have ME, especially if moderately to severely or severely affected. And for anyone else it's just added convenience.

    So I thought I'd set up an ME forum on HU so that people with ME could have this option open to them! So anyone with ME can follow either just this Myalgic Encephalomyelitis Community, or this Myalgic Encephalomyelitis Community plus other HU forums too which will all appear in the same news feed!

    I am a person with severe ME in the UK.

    i'm sorry to hear you are having problems with the site.

    Health Unlocked is not very well optimised for the apple devices including computers, laptops and iPad/iPod/iPhone unfortunately. I have had problems with this myself as I normally access the Internet from my iPod touch which has had some problems with HU access. But even on my family's iOS laptop it's not fully optimised for HU.

    Other administrators i am in touch with have also reported similar problems with Apple devices.

    I have noticed HU have made a few access improvements for apple devices recently so they are evidently working on it.

    I am also informing the HU managers of the ongoing apple problems with HU and asking them to continue trying to improve the glitches for apple users.

    So it should improve.

    In the meantime I'll try to give you the link again to the Leonard Jason research you mentioned:

    tandfonline.com/doi/pdf/10....

    I will also send u another message again with the text from the Leonard Jason study pasted into it.

    Let me know if this still doesn't work.

    Anyway, once again welcome and I hope u find the forum useful! :-)

    Take care,

    Starbys :-)

  • Hi again Bill,

    Below is the exact text which I've copied and pasted from the page on the 'Contrasting CFS versus myalgic encephalomyelitis/chronic fatigue syndrome' study by Leonard Jason et al, just in case you can't open the other link I sent you either.

    Take care and pls do let me know if I can help with anything else :-)

    Starbys

    Contrasting chronic fatigue syndrome versus

    myalgic encephalomyelitis/chronic fatigue syndrome

    Leonard A. Jason , Abigail Brown , Meredyth Evans , Madison Sunnquist and Julia L. Newton

    a DePaul University, Center for Community Research , Chicago , USA b Newcastle University , Newcastle-upon-Tyne , UK

    [Published in:] Fatigue: Biomedicine, Health & Behavior

    Volume 1, Issue 3, 2013, pages 168- 183

    Published online: 20 Jun 2013

    DOI: 10.1080/21641846.2013.774556

    Background: Much debate is transpiring regarding whether chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) are different illnesses. Several prior studies that compared the Fukuda et al. CFS criteria to the Canadian ME/CFS criteria found that the Canadian criteria identified patients with more functional impairments and greater physical, mental, and cognitive problems than those who met Fukuda et al. criteria. These samples were located in the Chicago metropolitan area, so the results could not be generalized to other locations. In addition, past studies used a symptom questionnaire that was not specifically developed to tap the Canadian criteria.

    Purpose: The present comparative study of CFS and ME/CFS criteria was intended to correct the limitations of prior studies.

    Methods: This article used data from three distinct samples to compare patients who met criteria for the ME/CFS Canadian clinical case definition to those who met the Fukuda et al. CFS case definition.

    Results: Findings indicated that fewer individuals met the Canadian criteria than the Fukuda et al. criteria. Those who met the Canadian criteria evidenced more severe symptoms and physical functioning impairment.

    Conclusions: Future research should continue to compare existing case definitions and determine which criteria best select for this illness.

  • Dear Starbys, sorry I haven't got the hang of this website yet. But thanks for your responses, eg Leonard Jason material.

    I'm at a loss of (succinct) words to describe my experience with ME/CFS. It's a long dreary story, like many others with the disease I'm sure. As you are no doubt aware, the most infuriating, tragic aspect of the malady is trying to get others to believe that I'm sick, including friends and family members.

    In the weeks and months aheard I will attempt gather information and insight from others on this website who have gone before me.

    Again, thank you for your input, Bill

  • Hi Bill,

    That's ok I was glad to help :-)

    We do all very much understand the difficulties of not only having to live with a debilitating illness but the disbelief and stigma from both people we love, friends, people we know, and some health professionals too, so you are very much not alone in that my friend..

    This website aims to link people who understand, for mutual support, friendship, and shared knowledge and resources and also to help out people new to the illness, whatever they need.

    Although there's not that many of us in this community so far, as it's all new, the people that are here are great people, so I'm sure you'll find the understanding you're looking for!

    Please let me know if you need any more help.

    Also if you want to ask a question or want more people to see what you write, it's best to start a new post (which has its own title and tags) which you do using the Orange button.

    A new post in its' own right will appear at the top of the 'News Feed' so more people will see it and hence you will get more replies.

    For now, take care and I hope things get easier for you soon and this website helps you.

    Best wishes,

    Starbys :-)

  • there is a great deal of information you can access freely on the hummingbird foundation for me no need to pay for overpriced or dubious books .best wishes.

  • Research Digest – December 2014: 10 Important Advances in ME/CFS

    solvecfs.org/research_diges...

  • Hi Ian123,

    Thanks for this. It's a really good link and I wondered if you'd mind me starting a new post using it?

    Hope you're ok and that ME you'll enjoy tomorrow without ME getting in the way!

    Thanks and take care,

    Starbys :-)

  • Sorry for the brain fog - wrote ME twice by mistake (ignore the first one)!

  • Certainly understand use where you choose I had no idea so put it here :-)