The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Eyes problems and CFS

Discussion in 'Other Health News and Research' started by tinacarroll27, Jun 28, 2017.

  1. tinacarroll27

    tinacarroll27 Senior Member

    Sancar, wastwater, adelheid55 and 5 others like this.
  2. AdamS

    AdamS Senior Member

    I've got reasonably bad myopia, -4.5 and -4.0 I also had quite a few problems with dry eyes about a year ago and had a quite rapid increase in nearsightnedness of about 1 diopter seemingly overnight which worried me a while back. Whether or not this is related to ME/CFS i'm not sure.

    When I was a kid I used to decribe a problem called 'the eye thing' where i'd get disorientated and visually overstimulated (usually in social situations or crowds). The docs said it was anxiety...the more I think about it, the more I wonder if i've had ME or something else wrong on a very low level since I was a kid.
    Manganus and Sancar like this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

    Interesting find.

    I have dry eyes, pain and focus issues.

    Instead of having that raccoon look of someone overtired I have that shiny red eyed squinty look of a junky who hasn't had a fix in a while.

    Would be nice if someone found a solution (pun) beyond eye gel.
    Sancar, adelheid55 and Webdog like this.
  4. Mark

    Mark Former CEO

    Sofa, UK
    Dr Hutchinson got some really strong results from her study (I think it's the one referred to here) which seemed potentially very valuable, to me - her presentation at IiME seemed to promise a simple, objective test of the visual anomalies she found in the majority of me/cfs patients she tested. She presented the findings at IiME 2015, as I reported here:

    Then she went on maternity leave; I've tried a couple of times to contact her without success. I suspect there has been no follow-up on this - she told me she wasn't sure what to do with her findings as they didn't seem to connect with any other active me/cfs research areas - which is a great shame if so, because the tests are quite simple so research would be relatively quick and cheap, and the results seemed very clear...I do hope someone will revive this...if I hadn't been so busy it's something I would have spent more time investigating.
  5. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I've asked about this before. I've been ill for years but only developed constant eye pain in the last few years - it is not the surface of the eye, but behind the eye (eye muscles?).
    Sancar, Forbin and Webdog like this.
  6. Forbin

    Forbin Senior Member

    Here's a link to a website about Dr. Hutchinson's work

    I found 4 ME/CFS- related studies by Dr. Hutchinson at PubMed, but all appear to be behind paywalls.

    Increased Vulnerability to Pattern-Related Visual Stress in Myalgic Encephalomyelitis.
    Wilson RL, Paterson KB,Hutchinson CV.
    Perception. 2015 Dec;44(12):1422-6. doi: 10.1177/0301006615614467. Epub 2015 Nov 3.

    Vision-related symptoms as a clinical feature of chronic fatigue syndrome/myalgic encephalomyelitis? Evidence from the DePaul Symptom Questionnaire.
    Hutchinson CV, Maltby J, Badham SP, Jason LA.
    Br J Ophthalmol. 2014 Jan;98(1):144-5. doi: 10.1136/bjophthalmol-2013-304439. Epub 2013 Nov 1. No abstract available.

    Characterising eye movement dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome.
    Badham SP,Hutchinson CV.
    Graefes Arch Clin Exp Ophthalmol. 2013 Dec;251(12):2769-76. doi: 10.1007/s00417-013-2431-3. Epub 2013 Aug 6.

    Patterns of abnormal visual attention in myalgic encephalomyelitis.
    Hutchinson CV, Badham SP.
    Optom Vis Sci. 2013 Jun;90(6):607-14. doi: 10.1097/OPX.0b013e318294c232.

    My impression from the abstracts is that the unifying feature may be a difficulty with the eyes tracking movement properly, or perhaps in working together in the case of pattern-related stress.

    My own personal bias would be to suspect that this has to do with problems related to the inner ear, which can affect control of the eye muscles as well as balance. Inner ear and balance problems are often reported in ME/CFS, and I'm guessing that they might be able to impair eye muscle control (as happens in nystagmus) even when the impairment is not sufficient to impair balance.
    Last edited: Jun 28, 2017
    Hutan likes this.
  7. Forbin

    Forbin Senior Member

    RE: dry eyes

    I developed dry eyes a couple of years ago. It was caused by blepharitis, a condition in which the oil secreting meibomian glands at the margins of the eyelids become clogged. Normally, the oil secreted by these glands mixes with tears, preventing them from evaporating too quickly. When the glands are clogged, tears quickly evaporate from the eyes leaving you with dry eyes.

    The condition is associated with psoriasis (an autoimmune disease), and I suppose blepharitis would be more common in ME if psoriasis was also more common in ME.
    Last edited: Jun 29, 2017
  8. viggster

    viggster Senior Member

    I've had really bad spells of a similar kind of eye pain, that I too thought had to do with the muscles that control eye movement. And also trouble focusing. There is a subspecialty called neuro-opthalomology where the doctors can test for things like difficulty focusing and other exotic problems. I have not been to see one but would be curious to hear if anyone has found such a consult useful.
  9. Sean

    Sean Senior Member

    Had sore eyes the vast majority of the time since getting sick.
  10. Valentijn

    Valentijn Senior Member

    Certain eye problems are a pretty common feature of mitochondrial disease. From what I recall, it's one of those tissues which are extra susceptible to impaired energy production. There's even a mitochondrial disease which only features eye dysfunction, LHON.
    BeautifulDay, sb4 and Manganus like this.
  11. Forbin

    Forbin Senior Member

    Sort of...

    Too my surprise, an ophthalmologist diagnosed me with fairly severe "latent strabismus" a few years back. Strabismus is where the eyes don't align correctly when they try to focus on the same object. "Latent strabismus" is when this only manifests when binocular vision is interrupted - as when one or the other eye is blocked. When using both eyes, you're able to compensate for latent strabismus (by definition).

    I could see how failures of compensation might lead to some of the visual problems associated with ME, like difficulty reading. I actually had pretty severe visual distortions early in the illness which seemed to be related to vertigo, but I suspect there was some interconnectivity between my vertigo and the latent strabismus. [ Actually, I suspect that an ME onset-related inner ear impairment led to both the vertigo and the latent strabismus. ]

    The test for latent strabismus (cover one eye, then the other) is so simple that I would assume that it is part of any routine eye exam performed by an optometrist. However, it wasn't until I was seen by a fairly senior ophthalmologist that I was diagnosed. [He knew nothing of my ME symptoms].

    He told me that my ability to compensate might diminish with age and I might then need prisms in my glasses. So far, so good, though.
    Last edited: Jun 29, 2017
    Persimmon and viggster like this.
  12. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I have seen such eye specialists and they were as useless as expected. One was a bit of an a-hole...
    Hutan, Webdog and viggster like this.
  13. charles shepherd

    charles shepherd Senior Member

    Information on research into visul problems in ME/CFS - this is a conference report

    Dr Claire Hutchinson, School of Psychology, University of Leicester

    Visual processing and ME

    Dr Hutchinson gave an interesting presentation covering the sort of visual problems that people with ME/CFS commonly report. She also described the way in which she has been investigating these symptoms in a group of 63 people with ME/CFS to see if they can be confirmed by objective measures of visual performance.

    Visual symptoms are quite commonly reported in a range of neurological diseases such as Alzheimer's and Parkinson's disease. Some of these symptoms may be related to what is termed cortical hyperexcitability - in other words, parts of the brain involved with visual messages become over sensitive. There is currently very little information in the medical literature about visual symptoms in ME/CFS but these problems are frequently discussed on social media and may have a significant impact on the quality of everyday life. Some people, for instance, stop driving as a result.

    Visual symptoms that people with ME/CFS often report include:

    •increased awareness or sensitivity to bright light

    •visual or reading fatigue

    •difficulty with focussing on images and following moving images

    •vision related headaches after reading

    •pain in or around the eye

    •dry and/or itchy eyes - dry eye syndrome

    From a research point of view, Dr Hutchinson has been carrying out a number of tests to see if these symptoms can be objectively measured and confirmed.

    Using a group of people with ME/CFS, along with a control group, Dr Hutchinson described some of the investigations she has been carrying out to measure:

    •cortical excitability

    •visual attention and the ability to ignore irrelevant background information

    •eye movement and the ability to track/follow objects

    The results so far, some of which have been published, indicate that basic eye movements to simple static targets are less accurate in people with ME/CFS and that moving eyes for even short periods of time induces eye-movement fatigue. This type of opthalmological testing has helped to confirm that people with ME/CFS have a range of problems related to visual attention that are consistent with their self-reported symptoms.

    •More information on this research can be found here:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    robson, Manganus, Mel9 and 4 others like this.
  14. Sing

    Sing Senior Member

    New England
    My simple view is that as eyes are largely managed by the brain, and in ME there are slower brain processes, trouble with multi-tasking and problems with the autonomic nervous system. Activities which are easy and straightforward for the healthy can be difficult "multitasks" for us. Walking or just moving down a city street, when once it would have simple to comprehend and navigate, is now more of a bombardment in which one can not only be overwhelmed but start to feel a sense of unreality because one's abilities are so out of phase with the demands of the situation. The tracking and interpreting of visual data is harder along with the necessary coordination with other body systems--such as balance, knowing where one is in space, often low blood pressure, inappropriate heart rate (too slow or too fast), vertigo, etc.

    Now I find moving objects and a complex field difficult, sometimes impossible to deal with well. As a consequence I almost never watch movies, and even digital print with its unnatural light, subtle flickering and its challenge to the brain to comprehend is extra fatiguing and challenging. The only sustained reading I can do is via the printed page in a position of immobility with my feet up.

    Suggestion for dry eyes:
    In the early years of my illness twenty years ago, my eyes became extremely dry I developed recurrent eye infections. One or two eyes would become red, oozing and infected for 3-4 days then would heal over the next half of the week. Then the infections would flare back up and the cycle repeat itself. This went on for months. All the Opthamologist could offer were prescription ointments and drops which cost far more than I could afford and which only helped a little. Then from my unconscious bubbled up the memory of a remedy my grandmother and mother had taught: making an eye wash with boric acid powder and rinsing as needed with an eye cup. I found out that the recipe was an eighth of a teaspoon of boric acid powder to a cup of boiling water in a clean glass jar, then cool and refrigerate, making a new solution every two weeks.

    This completely solved the problem of infection and gives thorough relief for my dry eyes. In checking with subsequent eye doctors, they find no problem with it. Boric acid powder straight is a poison, however, so it is necessary to be scrupulous, but it is well known as effective in knocking down the bacteria, fungi and infectious agents on the eye surface as well as effective in lubricating the eye. It costs next to nothing so the pharmacist told me that the drug companies got the right to make the boric acid powder manufacturers to remove instructions for eye wash from the side of their containers, supposedly in the interest of public safety. Yet when I read the top ingredients on eye drops and ointments, I still see boric acid listed at the top.
  15. wastwater

    wastwater Senior Member

    I was interested in this study and emailed them but must of been too late
  16. valentinelynx

    valentinelynx Senior Member

    Eyes are definitely an issue for me. One of my first symptoms after my sudden onset of illness in 1993 involved a strange and disturbing awareness of my eye movements, as well as a scotoma (little flashing hole in my vision) near the center of the visual field of my right eye. In retrospect, I believe these were signs of cranial neuropathy probably from my (then) acute borrelia infection. The eye movement thing lasted only a week or two. The scotoma took months to years to go away entirely.

    Now I have constant dry eyes and a continuous burning sensation in my eyes. I had attributed this largely to my constant allergy symptoms that started with onset of my illness. However, here's an article from 2015, about finding small fiber neuropathy in the corneas of fibromyalgia patients, suggesting that it's more than just dry eyes:

    Small fiber neuropathy in women with fibromyalgia. An in vivo assessment using corneal confocal bio-microscopy
    (For the full text, enter the PMID (26094164) at sci-hub. For some reason in this case, sci-hub gives you just the unedited accepted manuscript.)

    I also just learned that I have EDS (hypermobility type) and eye symptoms are common with that as well. Interesting (to me) is that I was born cross-eyed (strabismus), which fits the EDS thing. Although I had corrective surgery as a toddler, so my eyes look straight now, I'm sure I have the "latent strabismus" as I do not have functional binocular vision and see double when I'm tired. Although I don't notice that I'm seeing double—I'm so used to it that my brain just blocks it out, and I just focus on the image from one eye.

    In summary, my problems with binocular vision aren't likely to be related to ME/CFS/tick-borne disease, but rather underlying EDS (which seems to be a common fellow traveler with ME/CFS/FMS/tick-borne disease...) but the dry, burning eyes are more likely to be related to the illness that started in 1993.
    Hutan likes this.
  17. Mithriel

    Mithriel Senior Member

    Scotland is the place to go for eye problems and solutions. Rebecca Petris who runs it is the sort of advocate that I wish we had for ME.

    There is a major report coming out this month (July 2017), for which she was a patient representative, that should lead to exciting advances in the treatment and recognition of occular surface problems. The last report about 10 years ago, made a big difference as previously it was often dismissed by doctors as an "age thing"

    There are a lot of similarities with ME as the symptoms do not correspond to the signs so it is easy to dismiss as patients whining but the medical experts involved have been working with patients not against them.

    The tear system is massively complicated.

    Snowdrop and Hutan like this.
  18. Manganus

    Manganus Senior Member

    Canary islands
    Fits with my understanding, ...and with my experience too.
    My sister is worse affected by psoriasis, but I'm worse off with ME and eye problems.

    Behind the eye.

    There might be other tissues that may be affected. It doesn't have to be the muscles.

    Webdog, Hutan and Snow Leopard like this.
  19. ChrisD

    ChrisD Senior Member

    East Sussex
    I had never really experienced Eye problems with ME, only minor blurriness and floaters. But a couple of weeks ago, I took quite an extreme move of using Mutaflor (E.coli strain) with a Ketogenic diet to try to make an impact on the gut and body. I had an initial burst of energy for about a week, largely reduced PEM and ability to double my activity level which was amazing, but I started to notice increased floaters and more blurriness. A week later, my eyes became really light intolerant and very sensitive, also nearsightedness. It is still quite bad and I am mostly wearing sunglasses - even inside!

    I am trying to work out what could have caused this; either not adapting properly to Ketogenic diet and hence having energy delivery problems, too much E.coli? Bacteria Die-off causing detox symptoms. Clearly something has changed quite dramatically, my PEM is still reduced by around half but activity level has dropped again as eyes are causing quite a lot of pain at night so poor sleep.

See more popular forum discussions.

Share This Page