last thursday myself and many other folk affected with me/cfs symptoms attended a meeting in the south side of glasgow about the developments and advances in biomedical research and treatments of this illness. cathcart me support group welcomed dr abhijit chaudhuri, consultant neurologist at the essex centre for neurological sciences in essex. renowned as a caring researcher of me/cfs he formerly held the position of clinical senior lecturer and consultant neurologist at the university of glasgow and the southern general hospital.i took a few notes while he spoke and here is what i jotted down:
there is still no proper understanding of the condition, although there is no blood test to show it exists diagnosis is still possible, the severity of fatigue and it's impact on quality of life are similar to ms, emotional issues such as depression, muscle pain weakness and sleep disorder contribute to overall fatigue but are not the cause, it has been over hyped that patients are depressed - this is not unnatural in patients who can't work or have a normal life, ms is not thought of as depression but affects sufferers the same amount, different virus's are linked-these can trigger me but are not the cause, chronic fatigue and depression are different conditions, intervention for depression does not cure me, different stressors can trigger me - virus, trauma etc, there is no primary muscle disease in me,drugs for chronic pain, sleep problems and depression may improve quality of life but are not a cure, controlled trials for any treatment is necessary as symptoms may become better or fluctuate, some neurologists are now interested in me as they specialise in infections although most have stepped aside - this may change the way it did for stroke patients, nhs has failed patients as it is not practical for the government to care for a complex condition like me, could me be genetic? why are some people prone to viral infections.
dr chaudhuri then detailed some autopsy's carried out on me sufferers (i think they must have had very severe symptoms as many of them committed suicide-this highlighted desperation and lack of support from the medical profession) from them one major link stood out (seen in all but one case) and that was inflammation of the spinal cord-dorsal root ganglion cells (that's what the above photo is of). these could be a marker of previous infection like chicken pox. these cells however can't be seen through scans, only through extraction. this makes it that a controlled study should take place. maybe if this was shown to be the cause then anti inflamatory injections could be used as a treatment.
the only supplements that dr chaudhuri discussed were vitamin d and essential fatty acids for muscle pain.
i left (probably like the majority of others) feeling sad. everything that was discussed except the information on dorsal root ganglion cells was already familiar to me through my own research and understanding. i am taking fatty acids (omega 3)and will purchase some vitamin d as i have heard quite a bit about it recently. i guess i was not expecting to hear about a major breakthrough, but it would have been nice to come away with a bit more hope for myself and others with this illness. i did however come away feeling lucky - i had spoken to one woman who's daughter had been confined to bed for years. most of the time i get by and for that i am truly grateful.
