Saturday, 26 June 2010

biomedical research

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.


  1. Kim, it has been a while since I have been here...

    Today a bit short on time, work is waiting (and some coffee for my tired eyes). I get a vitamine B12 cure at the moment and that helps me a little. The level of B12 in my blood is too low, normally one needs 1µg per day, I get 1000µg as an subcutaneous injection every day. I have much more energy, I can sleep better and it takes some of the muscle aches. After ten days I will have to take B12 as pills, lower dosed, then we will see.

    As any other treatment I can´t say if this will be helpful, you have to test if it works for you since we all react different. It doesn´t take all my pain, but I feel much more productive and not so sleepy. B12 blood tests can be quite vague, the level of this vitamine is hard to determine, so you might need several tests and compare.

    Sending you sunshine and a warm hug,


  2. hello dear Juliane, so nice that you stop by here. that is really good news about the b12 injections. i am glad it that something is helping you a little. i met someone else recently that also said she benefited from this treatment.

    i am going to speak to my doctors again about this, however anytime i have mentioned vitamin supplements etc they say that i am getting all the nutrients i need from my diet which i strongly disagree with.

    i also heard about someone that is getting benefit from magnesium injections too.

    thank you for the sunshine, i can't send any back as it is just wet and dull here! however i can send you a big hug and a warm smile :-)

  3. I agree that one can get all the nutrients one needs from a good diet. For sure it is possible to get 1µg per day through fish, eggs and dairy products. But what I get right now are 1000µg daily - and that you would never be able to get through the food you eat, not even if it would only be base on chicken liver ;-) Other vitamines can be dangerous if you take too much, but the body can´t store vitamine b12 very well, it releases too quickly. After ten days of daily treatments I get it in larger intervals and have the feeling that it helps to make me feel better. And rather high dosed b12 than Lyrica and a whole lot of side effects...

    I will work in the garden today, not with my clippers but with my sewing machine. Hope your day is a sunny one!



  4. hi Juliane! i am so glad to hear that the b12 is helping you feel better, i hope to visit my doctor soon and ask her about testing my levels of b12 too. i think i am going to need some vit d also as we have a real lack of sunshine this summer :-{ (just lots of rain and grey skies!!)

    as always i am enjoying reading your blog, your midsummer party looked so much fun and and you had gone to so much trouble to make everything look amazing!

    have a beautiful day working your magic on your sewing machine in the garden...

    hugs and sunny smiles, kim :-}