Article: Australian CFS Science Symposium Overview by Rosamund Vallings

You can view the page at http://forums.aboutmecfs.org/content.php?309-Australian-CFS-Science-Symposium-Overview-by-Rosamund-Vallings

 

I see. Birmingham Hospital can test for it. It is the only NHS hospital I could find on-line that offer the test. They are a lovely bunch there, too. If a test were positive they would phone the gp, and insist on an urgent GI referral, for treatment. The (nigh on impossible) task would be to get a dr to look into dla as being implicated in CFS. I don't know if the Sheedy/De Meirleir paper, together with dla papers would sway them, even though there is a very strong symptom overlap.

Thanks for your reply, take care.

Glynis

 

Glynis - this does not start in the bowels - that came later I,m pretty certain - swollen glands flu like symptoms, declining cognitive abilities first with unnatural tiredness, muscles into spasm should hold a key. It always was and is viral. However if you can, read and follow the very best available (your own instincts) in the UK. Some do aid.

 

I understand, Enid, I have posted on the d-lactic thread how dla might occur following a viral infection. It is described in a calf model, but the author states:

"The mechanism is likely similar to that documented for D-lactic acidosis in SBS in humans except the etiology of the malabsorption is viral infection–induced villous atrophy rather than surgical removal of the small intestine. "

Then he goes on to say:

"There is a possibility, although it has not been described, that a similar scenario could occur in diarrheic monogastrics, including humans. Villous atrophy and malabsorption certainly occur in humans suffering from viral diarrhea, but whether there is sufficient fermentation to cause excess D-lactate to accumulate is not known. Metabolic acidosis was identified in human rotaviral diarrhea, and was attributed to carbohydrate malabsorption; however, the identity of the acids was not determined."

Obviously this is still in the context of a known bowel problem, just found it thought provoking considering the Sheedy paper.

Best Wishes

Glynis x

 

This is good stuff and a good read. very reassuring that we have so many great people from around the world working on ME/CFS. Don't anyone worry, the truth is near!

 

FROM CORT'S ARTICLE: "Notice that the basal ganglia in the brain shows up several times (this is not the first time)."

More on the basal ganglia:

I was amazed when I read once that the drug pramipexole (Mirapex), normally used for Parkinson's disease or restless legs syndrome, does occasionally completely cure fibromyalgia (completely cure means just that: you no longer have fibromyalgia, and you no longer need to take pramipexole or any other drugs, as the fibro has gone).

Pramipexole acts on the substantia nigra (a component of the basal ganglia), so this seems to again link the basal ganglia with CFS/Fibro.

 

This was provided me by someone who worried that patient 2 referred to Sophia Mirza and she provided Sophia's story in case some people thought it did

However, I am rather shocked by what appear to be inaccuracies in the description of the case of Sophia Mirza, case 2, in Dr O'Donovan's talk as described by Dr Vallings. It is very misleading to say that she refused any medical help and refused food and water.

I have watched the video of Sophia which her mother made to show her solicitor and listened to the recordings Sophia made of her interactions with the GP, social worker and psychiatrist, as well as reading many letters. I have also interviewed her mother and sister for the film "Voices from the Shadows" which my son and I are working on.

After becoming very severely ill Sophia was receiving medical advice and treatment from a specialist doctor whose treatment approach is described in Martin Pall's book 'Explaining "Unexplained Illness"'. Sophia found this treatment very helpful and her health and energy levels were improving substantially. She declined the offer of a place at Oldchurch Hospital because she was too ill to travel such a distance and she had made a researched and informed decision that the treatments on offer were not likely to be of greater benefit to her than the programme of medical treatment she was already undertaking, with the help of her mother a qualified and experienced nurse. She had already tried the various approaches that were available at that clinic and she had not heard encouraging reports of what had happened to other severe ME patients who had been there.

She was then threatened with being removed to a psychiatric hospital against her wishes, because she had declined the offer of a place at the ME clinic. This threat was carried out even though she later begged in desperation to be allowed to go to an ME clinic instead. She was told that she had had her chance.....

Her forcible removal to a psychiatric hospital and the total lack of understanding of ME by the staff and the psychiatrist resulted in a very, very severe deterioration in her illness from which she never recovered. She was removed from her GP's practice without being told and the only new GP she could find also didn't believe ME to be a physical illness. So, during the last months of her illness she could not ask for medical help from a GP because she had no GP with any understanding of ME as a physical illness to turn to and feared further psychiatric 'help'.

It is inaccurate to say that 'she refused food and water'. She became so ill, so intolerant of foods, that she could no longer eat, and then the same with water. It was not a matter of choice or refusal. This is, I believe, what also happened to Sue Firth and to Annabel Senior, both of whom died as a consequence of having ME - here in the UK. I have read some notes that Sue made about her illness and read the description by Richard Senior on the IiME website, of his wife's illness.

From all that I have seen and heard, while researching both the film and the book 'Lost Voices', Sophia comes over as a very articulate, intelligent, sane, independent and motivated young woman who did everything she possibly could to help herself get better. I admire her.

She had actually been ill for far longer than 5 years - probably since she had meningitis and two car crashes aged about 17. She suffered horrendously during the last years of her life. This was not a consequence of her own actions and choice, as the conference report seems to imply, but in spite of everything she and her family could do to help her and protect her.

 

FROM CORT'S ARTICLE: "Notice that the basal ganglia in the brain shows up several times (this is not the first time)."

You may want to look at hydrogen sulfide (H2S) and the basal ganglia. For example: http://webcache.googleusercontent.c...ia+H2s&cd=1&hl=en&ct=clnk&gl=us&client=safari

"Conclusion: Chronic and subchronic exposure to low concentrations of hydrogen sulfide and other organosulfur compounds (reduced sulfur compounds) do cause long-term health problems in humans. These problems appear as various symptoms of the upper and lower respiratory tract, central nervous system, skin and eyes. The central nervous system symptoms are associated with permanent neurophysiological deficits. Injury to the central nervous system includes damage to the basal ganglia and white matter."

 

So sad that Sophia Mirza's mother even now needs to defend her daughter against the bull crap out there ... i recognised it too as probably being Sophia. Its so wrong the attitude out there regarding CFS/ME among those who dont have a clue about it.
...

Australia has held some great Symposiums here, I really wish this info would fiter thou to our doctors thou as so many of us are getting crap here with our doctors.

(I found out yesterday not only had the doctor at the Flinders Medical Centre hospital in Adelaide told my mother I'd grow out of things .. (yeah sure, Im 39!!).. but also told my mother that I just need to get a grip on myself ).

 

(I found out yesterday not only had the doctor at the Flinders Medical Centre hospital in Adelaide told my mother I'd grow out of things .. (yeah sure, Im 39!!).. but also told my mother that I just need to get a grip on myself ).

Oh Tanya...<sigh> I'm so sorry.
What a buncha baloney!
Yes, let's all just get a grip on ourselves now. That's how to beat a multi-systemic neuro-immune disease! No funding needed,
just a better grip. What were we thinking?

 

I see so much daily locally in simple medical care - ambulance for a child in school next door - and quietly curse the whole grand structure of Uk medicine who should know more, especially with all the trusting innocents around them who trust in them.