About

I am Clark Ellis. I have myalgic encephalomyelitis / chronic fatigue syndrome and most of my blog posts are about this disease  – advocacy, the politics at play, about bad research like PACE and good research like the End ME CFS Project, and interviewing doctors or advocates, fundraising, etc. Due to my illness, most of my friends are on-line and I love to engage with readers, so I’d love to read your comments on my posts, or on Twitter and Facebook.

I am a writer by design, but didn’t discover this until I was an adult. I am entirely self-taught. School for me, was an under stimulating experience. I have days now where I learn more on a subject than I learnt in all my time at school. And I wasn’t a bad student, quite the opposite, I just had shocking teachers who saw mediocrity as an achievement. I believe we must always set our sights higher.

I write fiction, some of which will appear on this blog, as well as novels and screenplays that I am working on behind the scenes.

 

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13 thoughts on “About

  1. Hi, Clark. I am a writer with ME/CFS, too. I don’t have your gift for advocacy, but have written what I hope will be a major novel – with one of the three main characters having CFS herself. I believe in raising consciousness via fiction. Do you have the energy to read? I’d love to send you a review copy (no obligation – I know how precious our energy is).

    PS Loved your reviews.

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    • Hi Alicia, sounds great, I agree that fiction is a great way to raise consciousness of the disease. Well done for writing a novel, that’s hard enough at the best of times and especially difficult with ME/CFS. I’d love to read it if I can but I can’t promise because I’m already overdoing it. What sort of length is it?

      Liked by 1 person

      • It’s long (and the first books of a trilogy), but may or may not be hard depending on what you usually read, which, from your reviews, is very definitely mainstream fiction.

        I can send it to you – and you evaluate from there, finish if you like it and can handle it. Or you can check it out at Amazon (http://amzn.com/B017AZLTLG) where you should be able to read a chapter+ size sample – to see if you like my writing style.

        Note: by the end of the third scene, you’ve met the three pov characters – and that is the part you might wonder what’s going on. After that, it’s easier (IMHO).

        It’s hard for me to evaluate other readers because people are all over the map with what they read and like, and CFS people are even more variable because of the limited energy.

        Just let me know – I think it’s exactly long enough and has no padding. My one 2* reviewer (I think a Romance reader from her comments) thought it too long.

        But I really appreciate you agreeing with me that fiction is a great way to sneak some information into people – but the entertainment value has to be very high, and there can be NO preaching.

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      • Well, here we are over a year and a half later – so just a gentle poke to remind you we exist, Pride’s Children and I. I’m well into the middle book in the trilogy now.

        A comment on your blog reminded me (I’m slow) to come back and visit. I was just reading your thoughtful review of The Martian and The Stone Man.

        Hope your own writing is going well.

        Liked by 1 person

      • sorry Alicia, I’ll try to get round to it at some point, life with ME means months pass by like days. Unfortunately I’ve not been able to write anything at all for some time, most of my time the last year has been spent just trying to keep head above water. I miss writing though, I hope I can get back to it at some point.

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      • I hope you can get back to writing, too – for the pleasure in it. I have missed your posts.

        Don’t worry about reading – it will happen when it happens, if it happens. I will poke in another year or so – if I remember.

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  2. Hi Ellis, I was diagnosed with CFS when I was 15 after two courses of antibiotics to treat a sinus infection (that was most likely viral in nature) followed by a three-month battle with swine flu. Since then, I was never the same. Weakened immunity, allergies, IBS, GERD, anemia requiring iron transfusions, etc. All my major illnesses were precipitated by antibiotic regimens. At 22, I was given a course of fluoroquinolones, which damaged every organ system in my body.

    I developed hypothyroidism, fasting and post-prandial hyperglycemia, fibroadenomas, candida infection (UTI), bacterial vaginosis, and postural orthostatic tachycardia syndrome. My lab work revealed low gamma glutamyl transferase (GGT), low cortisol, low progesterone, elevated liver enzymes AST/ALT, elevated CH50, elevated myeloperoxidase, elevated fasting insulin, positive speckled ANA with a titer of 1:1280, positive rheumatoid factor IgM autoantibodies, positive anticardiolipin IgG autoantibodies, and deficiencies in potassium, magnesium, zinc, vitamin A, vitamin D, and B3.

    For the past 16 months, I have been experiencing fainting spells (sometimes 8-10 episodes a day), vertigo, tremors (during which my BP would shoot up to 140/90 and pulse as high as 150), tinnitus, severe pounding headaches, brain fog, memory loss, severe depression, severe neuropathy, dysautonomia, muscle atrophy, debilitating fatigue, bradycardia, low BP (hovered around 82/50 for several months), loss of period, ear infections, dysphagia, large visible lump in throat, profuse sweating, constant low-grade fevers of 100-101 degrees Fahrenheit, insomnia, bone and joint pain, redness and swelling in my palms, feet, knees, elbows, and hips, hair loss, malar rash, angular cheilitis, seborrheic dermatitis, dry eye, blurry vision, photosensitivity (for several months I stayed in a completely darkened room and couldn’t tolerate any light), difficulty breathing, belching, severe reflux and vomiting, abdominal swelling and stomach dissension, rectal pain, bleeding gums, mouth ulcers, steatorrhea, watery diarrhea, weight loss of 20 pounds, nutrient malabsorption, dehydration despite high fluid intake, new food allergies to avocados, bananas, cucumbers, dairy, intolerance to sugar, carbohydrates, and wheat.

    I require fecal transplants on a regular basis to try to control the flares (sometimes initially worsened by the treatment). I don’t know if fecal bacteriotherapy would help other CFS patients as well, but I have read about the role of the altered microbiome in the development of CFS: https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

    Best of luck to you, and keep fighting the good fight.

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    • Thanks for reaching out. I’m sorry to hear what a torrid time you’ve had. Have you looked into what the large visible lump in throat is? I haven’t tried a fecal transplant myself but have a couple of friends who have. It is on my list as a possibility if I worsen. It certainly seems to be the case that destroying the gut flora can have severe consequences, so I’m very much in favour of more microbiome research. The http://microbediscovery.org/ project is by far the most promising from an ME/CFS point of view, but there is lots of work in this area across medicine so hopefully breakthroughs aren’t too far away. Wishing you the best.

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      • Hi Clark, I saw several endocrinologists and an ENT about the throat issue, but none could pinpoint it. Nasal endoscopy and laryngoscopy revealed a very deviated septum and the most throat inflammation the ENT had ever seen, but I was constantly revealed to other rheumatologists, immunologists, etc. and no one ever had any answers at all. I have heard of the project you mentioned being conducted by Walter Lipkin. Also read about his involvement in a rare case of Castleman disease: http://www.sciencemag.org/news/2016/07/young-doctor-fights-cure-his-own-rare-deadly-disease.

        Ever since I became ill, I’ve had to make significant changes to my diet (as I suspect is the case for most CFS & FTS patients). I didn’t know it until I read about the SCD diet, but the foods I tolerate nowadays fall very closely in line with the SCD protocol. I don’t consume any sugars or carbohydrates of any kind nowadays. Ever since I developed the hyperglycemia, carbs, sugars, and starches like potatoes and carrots trigger severe neurological and psychiatric symptoms, most likely because of my inability to process grains properly. Have you experienced any resolution of your symptoms by changing your diet?

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      • That Castleman story is very interesting. I have had to make a lot of changes to my diet, I basically did an exclusion diet when I came down with ulcerative colitis and I stick to it pretty rigidly. Though I ate out the other day, which is rare, and although I picked the safest thing I got a bad reaction yesterday. Gut calming down a bit now. I found that I cannot tolerate preservatives (nitrites, nitrates, metabisulphite etc) or emulsifiers (soya lecithins, etc.), but also lamb (I love lamb so this is a real shame), water mellon, and a few other true foods. I can tolerate grain, but early on I struggled with it. I eat bread now that only had flour, water, yeast, salt and vit c in it. Seems to be fine. This is really an ME symptom more than a UC symptom, but I think the antibiotics just caused it to get a lot worse. There really ought to be some more research into why ME patients start reacting to foods they used to be fine with and get so many gut problems. Changing diet is very important to manage these problems. I know a lot of ME people who have had to change their diet, including many who can only tolerate things like white rice and that’s about it.

        The main thing that keeps a lid on my gut inflammation is mesalazine. I’ve been on the max dose since I got UC and if I try to lower the dose or if I forget to take a dose, I get ill really quickly with a lot of systemic inflammation. I am exploring why as I don’t really want to stay on the max dose forever and I also want something that works even better. How much this systemic inflammation is UC and how much is ME I don’t really know for sure, but I think the mesalazine helps with both.

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