ME - is it real?

[RosieH]

I had thought for many years that the M in Myalgic Encephalytis should really stand for Made-up (well made up in the sense that it's psychosomatic rather than imaginary), and everything I read linked it to depression and basically said it was depression for people who refused to admit they're depressed. Even now, I believe one of the best treatments is CBT.

However, my sister has just been diagnosed with it and is crying her eyes out talking about some woman who killed her ME daughter to put her out of her misery. So I figured it was time I moved away from the "get a backbone" stance and became a little more sympathetic.

Any thoughts on latest medical thinking? Online searches haven't helped me much.

[PeckhamRose]

It exists. My best friend has it. It's complicated but nasty. I shall ask her to PM you with various websites and forums. It is real. One thing my friend is not, is depressed, though it might piss her off mightily. It's not just medical thinking you need to read but the experiences of people who have it (real every day people from all walks of life - it does not choose a type or class of person to attack). But like many types of illnesses, some people are more easily diagnosed than others. A poor analogy is the idea that more black people are diagnosed as suffering mental illness than white people. Anyhow, I'll ask her to PM you.

I hate to say this but a forum discussion on opinions about ME will not enlighten anyone as to the facts of the matter.

[RosieH]

Thanks PeckhamRose, I really appreciate it, and I'm sure you're right about opinions. I asked in the hope of some personal experience (whether as patient or doctor - think there are a few Kings bods on here). I have a couple of friends who are doctors, one is vehemently of the belief that it's all in the mind, and the other that it's post-viral.

Am hoping to give my sister some insights as she seems reluctant to investigate herself and is convinced she's never going to be able to work again and will be confined to her bed. That said, I do think depression is a major factor in this instance, so that doesn't help.

[cdonline]

I can see the fatigue, depression, lack of confidence and all the other frightening effects of ME must be awful to live with.

I am one of those people who has concerns with all the various disorders that people are now diagnosed with and then given a pill to try to sort it out. The problem for me is that unlike other illnesses, it is not something that is living in you, a virus or a problem with the organs. for instance. It is often behaviours or that we display that are used to disgnose these conditiions.

I think that it is important that sufferers know this and maybe, can begin to take control of their lives with help if needed, for instance, therapy.

CBT is one approach that may help, but there is an increasing body of people and professionals that believe that it in many cases, does not deal with the unerlying issues that people bring with them. There are other therapies that may be as helpful or more helpful, depending on the person.

[PeckhamRose]

As promised, my friend who has this has spent a couple of hours writing the information for you (all) below.

I hope you take comfort from it, learn from it, and follow up the links from it too. If you need any more advice or help and can't get it from the links then please PM me and I shall pass on your questions to her, though she doesn't want to be overwhelmed!

East Dulwich Forum Posting: Some Facts On ME/CFS

? The medical profession now usually refer to ME as CFS ? Chronic Fatigue Syndrome. The terms are however used interchangeably and it is commonly referred to as ME/CFS.

? ME/CFS is classified as a NEUROLOGICAL DISEASE (ID 10 G93.3) by the ICD ? The World Health Organization?s International Classification of Diseases.

? It is, however, acknowledged that it is also a multi systemic illness i.e. other body systems such as the endocrine and gastrointestinal are frequently involved.

? The illness affects all age groups, including children, different racial and ethnic groups, and all socio economic strata.

? In the UK the two major charities who both offer help and advice to people with ME/CFS and are involved in research are:-

Afme ? Action for ME http://www.afme.org.uk/

ME Association - http://www.meassociation.org.uk/

The major organisation to gain an international perspective is: -

The CFIDS Association of America - http://www.cfids.org/ -

? Co morbid depression can occur with ME/CFS. It is my opinion as a mental health professional also trained in CBT, that the depression which occurs in such people is as a consequence of coping with physical symptoms and the many related losses associated with the illness e.g. loss of role / employment / relationships etc.

? In August 2007 NICE (National Institute for Health and Clinical Excellence) issued a guideline for health professionals on the management of ME/CFS.

http://www.nice.org.uk/Guidance/CG53

It recommends a ?one glove fits all? approach to treatment. It recommends only CBT - cognitive behavioural therapy and graded exercise therapy.

Concerns about the validity and reliability of the research which this document is based on has been raised by all the major charities and the British Psychological Society.

Two people with ME/CFS have just been granted leave in the High Court for a Judicial Review next year on the guidelines.

The guideline also neglects the severely affected.25% of people with ME/CFS are totally bed / housebound.

Prognosis ? most people will make some improvement over time but are unlikely to return to previous level of functioning.

[bignumber5]

oops, sorry, posted on wrong thread!

[Huguenot]

Edited at PR's request

Never one to cause unnecessary offence me ;-)

[SteveT]

I knew a lady some years ago who had ME before it was considered to be 'real' and then she somehow got involved with a complete and utter yobo who was deemed unsatisfactory. She never looked back and last I heard was progressing superbly.

So there is life after ME.

You might tell your sister RosieH, that things always change in life,

and one day she will meet her yobo in trainers and tracky bottoms, who will give her a 'good seeing to'

that'll get the phlegm off her chest, and it will all come right for her, this present condition will all be history.

It is rather like traipsing through the dark tunnel, eventually you come out to life at the other end.

I wish her well.

[PeckhamRose]

cdonline writes: "The problem for me is that unlike other illnesses, it is not something that is living in you, a virus or a problem with the organs. for instance. It is often behaviours or that we display that are used to disgnose these conditiions." Medically trained CFS/ME expert are you? See my mate's words. She has it - ME, I don't. And there is a lot of half arsed half baked poor and dangerous and cruel opinion about the real things people suffer from, even from doctors. My mate spent a good couple of hours writing all the real factual information for people to learn from, above. And as you see from it she was a mental health professional herself.

I know very little about ME, but she's taught me loads. RoseieH I hope your sister gets the best most informed care without hitting any of the negative nonsense out there, and in here.

Edited as a result of Huguenot's and cdonline's PMs.

[shoshntosh]

sorry, i don't know much at all about ME, despite the fact that my stepmom has it. (shame on me really) but i do know that a friend of a friend had it, very very badly in fact, and that she has recently undergone a therapy called The Lightening Process and that is has completely changed her life and the manifestation of her ME. as i say, i really don't know anything about the disease or this treatment, apart from when i saw her recently she was like a reborn person come back from the edge of life.

sorry to hear about your sister. it's not easy.