ME/CFS Similarity With MS: Myalgic... - Ramsays Disease

Ramsays Disease

567 members470 posts

ME/CFS Similarity With MS

Ian123 profile image
27 Replies

Myalgic encephalomyelitis - ME

Encephalomyelitis disseminata - MS (multiple sclerosis)

Show remarkable levels of similarity in phenomenology and neuroimmune characteristics

biomedcentral.com/1741-7015...

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.

Written by
Ian123 profile image
Ian123
To view profiles and participate in discussions please or .
27 Replies
SophiaG profile image
SophiaG

Information available please tell me where.

Ian123 profile image
Ian123 in reply to SophiaG

One source of booklets or downloads mssociety.org.uk/ms-resources the bowel and bladder booklets were helpful/straight forward advice.

SophiaG profile image
SophiaG in reply to Ian123

Video on page 2 easy than reading.

Ian123 profile image
Ian123 in reply to SophiaG

Whatever is best for you SophiaG

slowmotion profile image
slowmotion in reply to Ian123

Diet and nutrition saved me asking Sophia :-) Thank you Ian

Ian123 profile image
Ian123 in reply to slowmotion

Hoping the information proves useful for you slowmotion, often find a certain amount of personal adaptation is required when searching for the optimum balance.

slowmotion profile image
slowmotion in reply to Ian123

Thanks more self guinea pig LOL

Ian123 profile image
Ian123 in reply to slowmotion

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.

Good luck with the research slowmotion.

glasscaves profile image
glasscaves

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!

Ian123 profile image
Ian123 in reply to glasscaves

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.

ringading profile image
ringading in reply to Ian123

A careful history for transient neurological symptoms and a physical examination is warranted in any patient presenting with fatigue.

ncbi.nlm.nih.gov/pubmed/234...

Ian123 profile image
Ian123 in reply to ringading

Very interesting ringading thank you for sharing.

I think it shows the importance of defining the type of fatigue as fatigue is such a common symptom found in many illnesses.

Seascape profile image
Seascape

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.

Ian123 profile image
Ian123 in reply to Seascape

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.

Seascape profile image
Seascape in reply to Ian123

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.

Ian123 profile image
Ian123 in reply to Seascape

Relieved at not causing a problem when trying to help.

BagEnd profile image
BagEnd

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.

Ian123 profile image
Ian123 in reply to BagEnd

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.

RockRose profile image
RockRose in reply to Ian123

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.

Ian123 profile image
Ian123 in reply to RockRose

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.

budgiefriend profile image
budgiefriend

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.

Ian123 profile image
Ian123 in reply to budgiefriend

Medical care added into the care package - living the dream, I truly hope for a good outcome that effectively manages your pain.

The information and support will remain available as always wishing wellness.

budgiefriend profile image
budgiefriend in reply to Ian123

Dear Ian,

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.

RockRose profile image
RockRose in reply to budgiefriend

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.

Warmest hugs x

budgiefriend profile image
budgiefriend in reply to RockRose

Dear RockRose,

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.

Budgiefriend

aud01 profile image
aud01

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

big hugs xx

Ian123 profile image
Ian123 in reply to aud01

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.

You may also like...

Link to Audio, video, powerpoint and transcript of Dr Alastair Miller's lecture on ME/CFS on May 5th

lecture notes....

Research into CFS/M.E : Sleep study -London

http://www1.imperial.ac.uk/departmentofmedicine/divisions/brainsciences/psychopharmacology/saffe/...

Great page to hand out re: ME

Request to sign a petition to the government for funding for ME research

down to this horrible illness. The way medicine and attitudes to unseen illnesses is approached...

Please ask your MP to attend the APPG on ME Wed May 11th