Print

Posted in:

Fantastic infographic: ME vs CFS vs SEID

Sometimes it’s a little easier to view information graphically, rather than as lines of type on a page. To mark International Awareness Day for Chronic Immunological and Neurological Diseases (May 12), Kit from A rainbow at night put together this wonderful infographic (see below) to highlight the essential elements of the ME/CFS/SEID definitions.

See Also:

 

Kit hopes that “people diagnosed with CFS (or diagnosed with “ME” but using CFS criteria, which happens often in places like the UK) will read this and think twice about how they got their diagnosis, begin looking for the real cause of their symptoms with a doctor’s help.”

She adds: “…if they do unfortunately meet the criteria for M.E., they will learn what they’re really up against, how to manage this disease appropriately, and might even be able to find specialists to help with specific symptoms.

“Learning that you have the real M.E. also gives you the opportunity to slow disease progression with things like mitochondrial support, immunoglobulin replacement therapy, treatment for secondary infections, and energy management such as pacing and switching in contrast to forced exercise (repeated episodes of paralysis can cause additional permanent damage to the muscles; those unaware they have M.E. wouldn’t know this).”

Head on over to Kit’s site to download and share the graphic. As Kit says, “Like most diseases, people never hear of this one until it happens to them or someone they love, but facts about classic M.E. have effectively been buried beneath 30 years of misinformation. Many have lived with these diagnoses for years and never heard any of this before! It doesn’t have to be like this.”

 

me-cfs-seid-chart

Shares

Written by Russell Logan

Avatar

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

87 posts

25 Comments

Leave a Reply
  1. Fantastic work, Russell! But here I am with ALL the symptoms of ME and CFS and SEID, yet my disease was diagnosed as CFS 18 years ago. I’m confused about the divide between ME and CFS because all the CFS patients I know have all the symptoms also. Most of us call it ME/CFS now for good reason.

    • Hi Judy, thanks for commenting. As an ME patient you should have all the symptoms of CFS. As to whether all CFS patients have ME, that is arguable, I agree. All in all I thought it was a tremendous effort by Kit to put something like that together. I am in awe of her skills.

      • Thanks, Russell! Yes, Kit did a Beautiful job!! I’m still learning, but I’m of the camp that thinks ME and CFS are the same disease. I wish there wasn’t a divide between the two; it polarizes us; we need to be united. xo

        • I don’t agree with you, Judy. Although we can relate to the mutual suffering, people with ME and cfs need to be looked at, diagnosed and treated differently. Just like you can’t treat someone with bronchitis and someone with lungcancer the same. It is very important to know which one you have so it can be managed accordingly. Hope you are well.

          • More confused than ever. None of this makes sense. Like I said, I have ALL the symptoms of ME, CFS, SEID, as do hundreds of my friends diagnosed with CFS here in the USA. xo

        • Hi Judy, yes, please keep learning, because if you think they’re always the same thing it means you’re missing some crucial parts of our history and what these diagnoses actually mean for most people diagnosed with them. I’d like to suggest this part of my ongoing series, “The Parts of ME: What if it were you?” to help put this into perspective. This is not a name war. Thank you for reading and for your lovely comments xx

          • More confused than ever. None of this makes sense. Like I said, I have ALL the symptoms of ME, CFS, SEID, as do hundreds of my friends diagnosed with CFS here in the USA. xo

    • Judy it is impossible not to be confused but if you had sudden onset illness then its me another sign to quickly help diagnoses is me people often have scabs or little painful infections in there scalps 8i was told this by an American specialist but I cant remember which one it was also in his book again I cant remember which book sorry

      • I am intrigued by this Geoffrey. The little infections, I mean. I have what I thought to be pimples on my scalp that could possibly fit this description, but it is the first time I have heard of this being a sign of ME. No mention of it on the forums. Do you have any further info on this.

        • Very interesting! I started getting a fungal infection on my scalp and neck a few months before the onset of M.E., as my immune system began to overload and crumble; sounds similar to what you all are describing, maybe. To this day, it flares up when my immune system is weakened. As I now get IVIG every four weeks to treat primary immunodeficiency disease, it doesn’t happen until the days before my next infusion, when my system is at its weakest. I suggest trying antifungal shampoos and/or getting a full immune system workup to see if you might also have immunodeficiency that could be helped by immunoglobulin replacement.

          Kit

      • OMG! So THAT’s why I have those ridiculous little scabs on my scalp fairly regularly!! I could NOT figure that out!!! I thought it was from the shampoo, but switching to organic shampoo didn’t change anything! And yes, my ME/CFS hit all at once out of the blue… either that or it started as a flu-like illness…. I swear to God I can’t remember! I only remember not being able to move my lead-like body when I woke up that morning 18 years ago, and was totally exhausted and could barely open my eyes even. I couldn’t even brush my teeth without resting my arm many times. I literally had to crawl on all fours to get to my young daughters to parent them! Shit like that!! Thanks for this info, Geoffrey! Judy

    • Hi Ellis, thanks for asking. Happy for you to translate the article. As far as the graphic goes, probably best to ask Kit, although I am pretty sure that she would like for it to happen, to spread the message. 🙂

      • From memory, Kit has a pdf copy of the graphic which may be easier to translate inside pdf write software. Or she might be able to provide a format that you could translate.

      • Great, Russell, thanks! And I’ll ask Kit, I hope she can help me with a .pdf, that would be awesome 🙂

  2. I have all the symptoms of ME except sudden onset. But I was diagnosed with CFS because I am in the United States! No one here gets diagnosed with just plain “ME”. Sometimes CFS-ME, but never ME.

    • Hi Pam, There are extremely important political perspectives to the cfs-me debate which should not be discounted. That doctors too often diagnose cfs, and in doing so devalue the illness, is reason enough to focus on ME and define it as a separate disease paradigm.

      However the requirement of sudden onset is one of the criteria I would question. Even when sudden onset is identified, many patients acknowledge that there were previous signs something was wrong. So it is possible an underlying immune dysfunction existed, but was made apparent by a sudden onset event.

      • That was definitely the case with me, as it is for many of us–two years of immune system collapsing, collecting beatings, until one day I got “the” virus and that was “the” final trigger–ME was the result of that final virus initiating the damage. I more frequently hear of people who were completely healthy until that fateful viral attack, though.

        The acute onset is a requirement of primary ME in the Nightingale definition, and since Dr. Hyde has been studying us since the 80s and is probably our top expert in the world, I trust his judgment and his definition, which was created as a combination of classic definitions with the newer information we’ve gained since them, added in.

    • That is a major part of the problem – a refusal in the US to accept that Myalgic Encephalomyelitis exists!
      The “fatigue syndrome” concept was invented in the USA in the 1980s, remember: it didn’t exist before. Its purpose was, and is, to make M.E ‘go away’ and its supporters do this by encouraging the belief that US docs can ‘only’ diagnose a fatigue syndrome, never M.E. Why are the docs so passive? I don’t know. But US patients, too, need to show some backbone and unite against use of a label which denies them the right to be correctly treated, and stop meekly accepting the wrong diagnosis. “Fatigue syndrome” is a variant on “Stockholm syndrome” – identifying with your abusers and playing their game.

  3. From a fellow Aussie (Adelaidean),with a number of #VZV related diseases including #severeRamsayME (bedridden 90%),thank you so much Russell for your site and sharing Kit’s amazing work.
    Vaguely remember reading a journal article from HHV-6 Foundation re: scalp scabs being one symptom of active HHV-6…but with so many sub-types/variations/severities of ME symptoms it all gets rather confusing to say the least:)
    Wishing you all the best and thank you again for your site. I have tracked down email of CEO of EmergeHealth after reading your Ampligen article,when I can will email him and share any info..fingers crossed better treatments on our shores soon!

  4. this is of incredible value, Russell, and I stuck upon it right at the right moment. Thank you so much for putting this together in such an impressive survey

One Ping

  1. Pingback:

Leave a Reply to Judy Acton Ayala Cancel reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.