Groundbreaking Study

[livingwithcfids]

title: University researchers launch groundbreaking new study into symptoms of chronic fatigue syndrome (Very surprised the UK is doing anything with CFS, as the NHS strongly opposes it for some reason. )

Participants needed to take part in study, the first to look in-depth at vision problems caused by the disorder

Researchers from the University of Leicester have launched a new study into vision problems suffered by patients with Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS). People who suffer from ME/CFS typically experience a range of symptoms which may include extreme tiredness, painful joints, headaches and digestive problems.

The team from the University of Leicester's School of Psychology is undertaking the first study to look in-depth at visual issues in ME/CFS patients. The researchers hope that collecting medical evidence of such symptoms could aid in the diagnosis and treatment of ME/CFS.

There is little consensus on the cause of ME/CFS or on how to treat patients with the condition. Although vision problems are widely reported by ME/CFS sufferers, research in this area is scarce and little formal evidence of such issues has been documented.

The researchers are actively looking to recruit participants to take part in the study.

Steve Badham, who is running the study, said: "This project provides us with an excellent opportunity to study the link between vision and ME/CFS. Understanding this relationship will allow us to better differentiate between ME/CFS and other conditions, and to learn more about the symptoms that patients are suffering from."

The University of Leicester team hopes to investigate a range of basic visual problems commonly reported by ME/CFS sufferers, such as hypersensitivity to light and difficulties focussing on and tracking objects.

ME/CFS affects around 250,000 people in the UK alone. The main symptom is persistent fatigue and tiredness that doesn't go away with rest and has no obvious cause. Sufferers may also experience other symptoms and can find themselves unable to work or take part in activities. Gathering hard evidence of the symptoms and effects of ME/CFS can aid in treatment and diagnosis and help raise the profile of this debilitating illness.

The diagnosis of ME/CFS has been a controversial one for many years, because the cause of the condition is currently unknown. Suggested treatments for ME/CFS include psychological interventions such as behavioural therapy, and medication such as painkillers and low dose antidepressants. There is no known cure for ME/CFS.

The researchers are looking for anyone with a medical diagnosis of ME or CFS to get in touch if they wish to help out with the study. Participants will take part in the study at the University, involving visual tests and tasks on a computer. You can contact Steve Badham by email (sb569@le.ac.uk) or telephone (0116 229 7081) for more information about volunteering. Even if you dont think you suffer from a vision problem, you may still be eligible to take part.

FUN FACT! The NIH spends $5 per patient on CFS research each year, compared with $400 per multiple sclerosis patient and $3,000 per HIV patient.

 

[max]

Groundbreaking - not.

 

[livingwithcfids]

Sorry Max, just going by what the title says. here
http://www.healthcanal.com/disorder...y-into-symptoms-chronic-fatigue-syndrome.html
maybe they are exaggerating a little.

 

[pine108kell]

I would suggest that the hypersensitivity to light is not a "vision" problem--it is a much more serious neurological problem. I'm sure that most people who experience this know what I am talking about. It seems strange that resources would be wasted focusing on "vision".

 

[Cort]

What a strange study! Of all the things to spend your money on. That's a head shaker for sure. How about a few good exercise studies (???)

 

[Valentijn]

Maybe they'll tie it in with our "excessive" use of the internet for researching and advocacy. Haven't the psychs taken stabs in that direction before, albeit via the media rather than via research?

 

[justy]

I agree that its not groundbreaking, but i disagree with you Cort. Vision and eye problems are a very big problem for many PWME, and they are symptoms that are not taken seriously by either doctors or opthamologists - they just dont know how to deal with someone who turns up with blurred vision, severe eye pain, light sensitivity, perceptial and spatial problems etc. We have touched on this already on another thread about sensory gating deficit. Excercise is not the be all and end all - i wonder why you think it is?

 

[fla]

Frequent eyeglass prescription changes is a common symptom that has surprised my optometrist. Sure it's not a core symptom and probably a consequence of many mitochondria in the eye muscles failing but at least it's a biological and not a psychobabler study. It's actually a proof against the deconditioning argument since even eye muscles are weakening and we still use our eyes the same way.

 

[Esther12]

Possibly related: I was reading about some vision/motion problem related to dyslexia which can cause fatigue. It all looked a bit uncertain though, so I didn't do much research on it.

There are so many different things which can cause/result from fatigue. eg: If some of us do have slight problems with visual processing, and that means our brains need to work harder, then that could mean that we are less able to deal with and adapt to other problems and more likely to result in chronic fatigue eg: a severe infection with glandular fever, and resulting problems.

Or it could be that whatever is causing a persons fatigue also leads to specific vision problems.

This study could throw up something new and worthwhile. They would need high numbers to tease out possible sub-sets though.

 

[Purple]

(Very surprised the UK is doing anything with CFS, as the NHS strongly opposes it for some reason. )

From http://www.meassociation.org.uk/?p=9625:
"This study is being co-funded by ME Research UK and the Irish ME Trust."

 

[Glynis Steele]

D-lactic acidosis, or d-lactate encephalopathy without the acidosis, may be implicated in CFS, causes changes in the eyes, such as blurred vision, nystagmus and ophthalmoplegia, which is a paralysis or weakness of one or more of the muscles that control eye movement and headaches. This study might confirm that some people with MD/CFS may have visual anomolies, but I doubt they will be able to say why this is so.

High d-lactic levels also cause severe lethargy, slurred or indistinct speech, difficulty in speaking, difficulty in walking or ataxia, hyperventilation, clumsiness, disorientation, excessive irritablity and other neurological changes, that sound similar to ME/CFS symptoms.

 

[Battery Muncher]

I agree with justy. I think the more evidence of biological problems we can muster, the better our case is for additional research. So the fact that they're willing look at physiological issues is heartening.

 

[Sallysblooms]

My eyes have been improving. Very interesting. I know it is the supplements, Green's First Powder and the antioxidents in supplements and food. Also, the balancing of my hormones. These are all important for eye health of all kinds.

Countries need to spend money to find out more and more about supplements and keeping them EASILY accessible instead of making them harder to get for so many.

 

[Esther12]

Anyone close enough to Leicester to be able to take part? It's much to far for I, but it would be good to help them get easy access to patients.

 

[Camilla]

What a strange study! Of all the things to spend your money on. That's a head shaker for sure. How about a few good exercise studies (???)

I agree! I was surprised to read that ME Research UK was one of the sponsors.

 

[richvank]

Hi, living.

Thanks for posting this. I emailed Dr. Babham and suggested that they include visual contrast sensitivity testing, a la Dr. Ritchie Shoemaker, if they are able to do so. This testing detects neurotoxins in the brain, including biotoxins, mercury and some organic solvents. Dr. Shoemaker finds these in many PWMEs.

Best regards,

Rich

 

[justinreilly]

Frequent eyeglass prescription changes is a common symptom that has surprised my optometrist. Sure it's not a core symptom and probably a consequence of many mitochondria in the eye muscles failing but at least it's a biological and not a psychobabler study. It's actually a proof against the deconditioning argument since even eye muscles are weakening and we still use our eyes the same way.

Well, it's being done by a psychology dept so I would bet there is some BS agenda.

 

[xchocoholic]

At the risk of sounding like a broken record, ocular ataxia is associated with gluten ataxia and should resolve with a gf diet.. Dr hadjivassilou talks about this in his papers
on gluten ataxia.

Objects appeared to be floating when I walked but this went away within a few days or
weeks of my ataxia vanishing. My arms stopped going limp when I washed my hair
too. Dr h refers to this too.

One other cause of vision problems is blood glucose issues. Diet can help this usually.

Not that my vision is perfect now but it's 1000x better.

Tc .. X

 

[Sallysblooms]

Supplements are great for blood gluscose as is food. Eyes, nerves all affected.

xchoc, I stopped gluten over a year ago. Always a good idea if you have POTS, just in case there is a sensitivity, no way to test that.

 

[Tia]

But it's interesting though to see that the studies and word about ME is spreading like fire thorugh the world. I winder if it has anyting to do with either Mikovitz stiring up in the world of ME or with the Norweigan scientists? because usually this much doesn't happen..right?