ME/CFS now a possibility ......

Lots of ((((((((((((((hugs))))))))))))) for you Bren.

Limboland undoubtedly sucks :(

I hope the ME guy can help.

Karen x

hi bren, awwwwwww hun, you have been going on now for so long,and its not nice when you see the neuro,hoping for maybe something at last, you come away with more worry and despondency.

Limboland is the worse place ever, i do hope you get your answers very soon and let us know how you get on with the rheamatologist,we are all here for you to talk to anytime you want, take care lots of love n hugs Chris xxxxxxx

It is the first time i have heard M.E. being diagnosed by the ruematlogist as it is classed as neurological disorder.

As user02 stated it is actually a neurological disorder nothing to do with rhuematology.

You need to see an M.E. specialist who knows what they are talking about.

My daughter has M.E and she was diagnosed by the specialist clinic in Bristol, however, they are still not sure she has M.E. because she had demylinating lesions on her MRI but this can be normal with M.E. apparently which is odd.

A rheumatologist can diagnose you with Fibromyalgia which comes under their umbrella.

Really I dont understand why our neurologists are dragging their feet over M.E. when it is classed as neurological. My neuro doesnt even believe it exists so what chance have we mortals got if that is the attitude.

Recovery from and severity of Myalgic Encephalomyelitis

M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. It can also be fatal. Patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis.

M.E. is a life-long disability where relapse is always possible. Symptoms are extremely severe for around 30% of sufferers leaving many of them housebound, bedbound and severely disabled. One specialist found that M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest.

Truly M.E. can be one of the most devastating and horrific illness there is, yet many with M.E. are subject to repeated medical abuse and neglect because of the way the illness has been dishonestly ‘marketed’ to the public as being psychological or ‘behavioural,’ or as being a problem of mere ‘fatigue’ or a ‘fatigue syndrome.’

Sub-grouping or refining or renaming ’CFS’ will only waste another 20 years. There is no such distinct disease/s as ‘CFS’ – that is the entire issue. For the benefit of all the patient groups involved; the bogus disease category of ‘CFS’ must be abandoned and patients with M.E. must again be diagnosed with M.E. and treated for M.E.

Due to an overwhelming amount of compelling scientific evidence, the World Health Organization correctly classified M.E. as a distinct organic neurological disease in 1969 – this classification/definition and name must be accepted and adhered to in all official documentations and government policy.

PLEASE help to spread the truth about Myalgic Encephalomyelitis.

This appalling abuse and neglect of so many severely ill and vulnerable people on such an industrial scale is inhuman and has already gone on for far too long. This will only change through education. People with M.E. desperately need your help.

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Please visit A Hummingbirds guide to Myalgic Encephalomyelitis it is very imformative.

I despair with our medical people in the UK until they get together and sort this out there are going to still be so many ,many many people in limbo land.

My GP finally agreed that i more than likely have MS and they are treating me as such now although there is no treatment for me now as after 5 years of being in limbo land the damage is done, but i think the fact i fell over outside her office kind of convinced her that my illness is degenerative and not something like Fibromyalgia.

I would have been quite happy to be told I have M.E. actually but I was told I dont have it as i had optical neuritis, and lesions on my spinal MRI.

Dont be fobbed off but don't for one minute think that M.E. is nothing because in actual fact as other poster said the symptoms are virtually the same as MS and just as debilitating. Big hugs. Do the research that's what i did.

IF it is M.E. think about what might have happened prior to you getting sick.

My daughter had Pneumonia which is classic for M.E and was going through a really bad time in her personal life.

Take care and I hope you get some answers. (Sorry i am rambling been poorly for weeks lol and my brain has not been exercised lol).

Hi Bren2, Just read your post and wanted you to know that you are not alone.
Apart from my 2 lesions we are in the same boat!
There is a new International Consensus on ME/CFS which can be accessed via the ME Association which defines ME (the neurological illness) as opposed to CFS (which includes post-viral fatigue syndrome, althlete overtraining syndrome, fatigue resulting from a major depressive illness etc - i.e. things that you can recover from).
ME is defined by the World Health Organisation as a neurological illness (G93.3) and I am still bewildered by the lack of acceptance in this country.
I intend to send a copy to my neuro and hopefully he will have time to read it!
Hugs,
Margaret

Maria, the 25% of people bedbound for years with ME and the ME patients who die of sudden cardiac arrythmias can't be called benign.

The problem is them lumping CFS and ME together when they are two distinct disorders.
Jacqui
xx

To be honest I think we re given a dx of cfs because they dont know what is wrong with us, Ive seen a sprecialist in cfs and even he said the label of cfs fits me, only until they can find another cause, these seizures are terrifing the first one my 12yr old daughter was holding onto me thinking I was dying, Im trying to find the energy from somewhere to carry on fighting for a dx