With an overlap in symptoms information is available that saves re-inventing the wheel as MS was in the same position as ME is now forty years ago it was called Hysterical Paralysis, not taken seriously until a bio marker was found a familiar story on the way medically unexplained chronic illness is treat.
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Ian123
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Hoping the information proves useful for you slowmotion, often find a certain amount of personal adaptation is required when searching for the optimum balance.
Afraid so, you will know the way results feel which is something that cannot belong anywhere other than with your own decisions made with the best advice/information available.
I've been ill with severe ME for 19 yrs and as a Distict Nurse when the illness began, because of the symptoms I had, I thought I had MS. It affects me so similarly to MS throughout every body system and is extremely debilitating, so much so at times that I can't move, feed myself, talk , even opening my eyes is an effort. It is like being paralysed and the only thing that helps is to lay flat and quiet until my energy raises a little. Even talking too much or texting causes a crash. This article is so true!
The fatigue in MS or Lassitude is a different experience from the Post Exertional Malaise that defines ME, the reasons why such a difference occurs amongst all the similarities would be one of the greatest breakthroughs in the understanding of both conditions.
Surprising similarity when I think I wonder at the surprise seeing something which has stared me in the face all this time. Obvious that neuro shares some in shock at so much when I have seen neurologists without one word what can I say.
I apologise for any shock caused it was never my intention, this post was intended as signposting information that could be used for improving symptom treatment.
Nothing as needs apology Ian the shock was something appearing from the dark thats safe when you know whats there. I cant believe how I did not connect another neuro before now.
Hillary Johnson in the book Osler's Web noted that some MS diagnosis were later altered into ME with lesions showing on MRI scans causation in the original diagnosis.
Neuroimmune factors could be one of the polio viruses that Ramsay considered when Post Polio was against Neurasthenia as a medical description with less information than clinicians posses now.
Will research Osler's Web I had not heard of it, thanks for that.
The immune system involvement goes beyond neuroimmune in my opinion research evidence shows a mix of genetic predisposition, viral/bacterial/toxic agents acting on a damaged immune system with each perfect storm falling into different areas or phenotypes.
Yes, all those factors feel true, Ian, both from experience and observation...a truly multifactorial mix, hoping and trusting more threads of clarity and understanding arrive as more serious research into bio-markers and genes takes place.
I wonder what would be revealed if more of us had all brain scans or oxygen measurements...
(Personally I make sense of the experience of reduced oxygen to the brain alongside inflammation and viral factors, but these are just a lay-person's hunches, rather than a one-size fits all - which I strongly suspect it doesn't...
Feeling some encouragement that Suzanne Vernon (outgoing director of Solve ME/CFS initiative ) is sustaining her research commitment with a new approach based on personalised medicine and computational biology. Oh, may these researchers (all of them) keep-on the case and untangle this web for enhancing many lives being lived.
Lay persons views that have become their own personal expert, I agree inflammation, oxygen/blood perfusion are factors affecting the brain. Some evidence of reduction in white matter was shown by the Stanford group that continue med.stanford.edu/chronicfat... producing high quality research.
I had read somewhere that a subgroup of ME/CFS patients showed lesions on the brain though in a different area than commonly found in MS, unfortunately I can not remember where that came from so a link could be added.
Keep positive the good work of unravelling the secrets has moved further in the last five years than the last thirty, viewed as an interested observer.
I want to say thanks for your information, Ian. I have been having two extremely bad weeks. Episodes of various kinds and overall severe pain that rarely lessens no matter what I do.
I will look forward to reading this when i feel more able.
My carer (who has started this company with her husband, the two of them being carers for over 30 years) has diligently pursued the task of finding me a GP and has registered me with one. She intends now to make an appointment with a doctor and discuss my situation with them. i can hardly believe I have someone doing this for me. I will write more in a suitable place when I am well enough to do so.
Yes, better than could have been expected to get such a carer and her husband in partnership with their company working outside of 'payment time' to get my needs met with medical care.
Thank you so much for your wonderful presence and engagement with all of us here. A valuable member of this fine group.
Dear Budgiefriend, feeling so genuinely and sincerely relieved for you that with help of carers, there's some long overdue movement on finding a suitable Dr. when truly needed. Holding-out for you hugely, that this leads to finer-tuning of what's really happening with you (as so conscious various symptoms have exacerbated for you) and really trusting this brings some appropriate ways forward.
Your concern and support mean so much to me, and along with the other wonderful friends I have here have kept me hoping that things will improve, and staying happy overall.
I will keep everyone informed. Thanks so much for your hugs and kindnesss.
I have fibromyalgia and Sjögren's syndrome , and have cfs although have never been told it as a diagnosis , but my mum has MS and I have all of symptoms she has.
Part of my SS is dry glands . my eyes are the worst just now and I get false tear solution to wet them . anyway my mum is turning 80 soon and for a few years I've been telling her she has dry eyes and to make sure her MS was a proper diagnosis.
so I think that MS/ME/SS/CFS are all very very similar ..... hope I'm making sense . I haven't read all the posts I just wanted to say my bit xx
I have Sarcoidosis that brings some insight into the dry eyes, dry mouth symptom along with arthralgia that commonly accompanies it making a complex problem of where the pain is from.
My mum had MS for over thirty years so possible genetic link on the auto immune but makes no difference in the here and now other than I had a practical example of how coping strategies should be.
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Thank you Ian
Possibly misdiagnosis of my CFS? Extreme weight loss and severe fatigue. 
The American Institute of Medicine report on redefining ME/CFS - they suggest a different new definition.