Lightning Process??!!!

[Pebble]

There is a difference between 'being apparently successfully treated by a homeopath' and 'being apparently successfully treated by homeopathy'.

If the person concerned is also giving advice on diet, etc, any results aren't necessarily anything to do with homeopathy.

Likewise, if some foods are part of the problem, if the person is [apparently] using an [apparently] wacky process to work out foods to avoid, etc, it doesn't mean that they can't end up with useful results even if the process itself doesn't work - they could try things until they get lucky, or could be choosing things based on general experience rather than the method.

That is undoubtedly part of what goes on but there is so much more. There certainly is the caring effect - if you get someones trust they will see improvement where there is none. There is regression to the mean - if someone is at a low point when you first encounter them they will almost always improve. There is the natural hisotry of conditions, that relapse and remits unpredictably and can easily be interpreted as benefit. Put these together with a conditon like childhood eczema, anyone who can hold your faith for a few years while trying different apparent remedies will undoubtedly be canonised as a life saver for ever more.
Insect allergies are even more interesting, since in a given year some one may exhibit a more dramatic response than in other years, so advice, well intended. to be extra cautious, can be shown to be nonsense in most instances. The natural history is for most to do well longterm, there are a few nasty exceptions who following the more lax advice end up dead - but who is reporting these?

[arison]

I have to laugh when ignorants quote "some people say they have ME just so they can claim benefits"

Had you ever been ill and claimed benefits then you would know how demoralising it is not only to claim benefits, but to live in poverty and not have a job like every other "normal" person.

XMRV/MLV Whittemore Peterson - please research these.

The reason people try these half cocked therapies is because hardly any scientific research into ME has taken place and so people are nothing but desperate to get better! ME first occurred in the 1950's and still, over fifty years later people are still facing ignorant jibs about being work dodgers.

ME is a multi system, neurological illness that has similar symptoms to MS.

I would like how some of you would cope with an physical illness that merits hardly any research and is treated with Cognitive Behavioural therapy with patients being left to fend for themselves!

[Croydon Bob]

ME is a multi system, neurological illness that has similar symptoms to MS.

Actually the latest thinking is that it is caused by a virus. Like many other illnesses. It just took a stupid length of time to find the virus, mainly because most people weren't looking for it.

I'm not sure who you are having a go at in your post. Most of the people on this forum would broadly agree with you. But this thread attracted a particularly large number of trolls posting bollocks.

[tolman]

I have to laugh when ignorants quote "some people say they have ME just so they can claim benefits"

Had you ever been ill and claimed benefits then you would know how demoralising it is not only to claim benefits, but to live in poverty and not have a job like every other "normal" person.

There is a quite difference between saying "some people say they have ME..." and saying "everyone saying they have ME is making it up or imagining it".
A great deal comes down to the context in which it is said.

A person may say "some people say they have cancer in order to get sympathy" or "some people say they have back pain in order to skive off work" but that doesn't imply that the person saying it necessarily doesn't believe that cancer or back pain actually exist.

[Pebble]

The reason people try these half cocked therapies is because hardly any scientific research into ME has taken place and so people are nothing but desperate to get better!

If you search under myalgic encephalopathy, you will find little research, since the accepted term is CFS (chronic fatigue syndrome) with over 4000 publications - research advances have been mainly hampered by indadequate definition of the syndrome under investigation, really only in the last decade or so has there been any agreement on the precise subgroup that was likely to have a single or small number of pathological causes.

As for MS - fatigue, depression and anxiety are indeed very important contributors to the symptom burden in this condition, it is however, very distinct because of the specific neurological lesions that in most cases lead to symptoms and findings that are readily distinguished from ME/CFS.

[Admin]

I have to laugh when ignorants quote "some people say they have ME just so they can claim benefits"

Had you ever been ill and claimed benefits then you would know how demoralising it is not only to claim benefits, but to live in poverty and not have a job like every other "normal" person.

XMRV/MLV Whittemore Peterson - please research these.

The reason people try these half cocked therapies is because hardly any scientific research into ME has taken place and so people are nothing but desperate to get better! ME first occurred in the 1950's and still, over fifty years later people are still facing ignorant jibs about being work dodgers.

ME is a multi system, neurological illness that has similar symptoms to MS.

I would like how some of you would cope with an physical illness that merits hardly any research and is treated with Cognitive Behavioural therapy with patients being left to fend for themselves!

Do you know what the problem with a posting like yours is?

You sound like an example of the sort of CFS sufferer you seem to think doesn't exist!

Honestly, if you want to be taken seriously, a change of attitude might help. After a quick re-read of the thread it seems to me that most of us on here have taken this topic seriously and treated it fairly and honestly.

I can't see the need for, or understand the purpose of, your outburst.

[arison]

ME/CFS is a trivial disease.

Those who say they have it can't prove it. They say they feel ill, that they have pains in the body, aching muscles, exhaustion, headaches, they wake up sweating and they can't sleep properly. They spend most of their time resting, avoiding activity. If they are doing it to get drugs or treatment or sympathy or attention then they are out of luck because they won't get any.

They stop work and give up their hobbies. Their world shrinks rapidly. They struggle on until their money runs out, surrounded by the detritus of their former lives. Either they give up their houses and worldly goods or they are seized in payment for their mounting debts. Usually their spouses leave them - if they stay then their lives are ruined too. If they're lucky they have somebody who will take them in.

Some make a nuisance of themselves for a while, constantly seeking treatment and taking various pills in the hope that they might feel better. After a while they stop trying. They get the message: nobody cares. After that they're little trouble to the system. Statistically, there's hardly any chance that they'll get better. There's an increased chance of dying of heart disease or cancer because they're unlikely to get a diagnosis early enough.

However the good news is that ME/CFS itself is not usually fatal. The bad news is the same as the good news.

What a silly man you are. Google Sophia Mirza or read the website Sophia and ME.

It amazes me people remain so ignorant in this day and age with all the resources we have. Ignorant or stupid - I'm not sure which, but then I probably don't have an opinion because I have ME therefore I am a nothing.

[arison]

Actually the latest thinking is that it is caused by a virus. Like many other illnesses. It just took a stupid length of time to find the virus, mainly because most people weren't looking for it.

I'm not sure who you are having a go at in your post. Most of the people on this forum would broadly agree with you. But this thread attracted a particularly large number of trolls posting bollocks.

Having a go at the trolls posting bollocks.

It may be caused by a virus, but until that's proven, and I don't think we are far from that - the classification with the WHO remains the same.

[arison]

Do you know what the problem with a posting like yours is?

You sound like an example of the sort of CFS sufferer you seem to think doesn't exist!

Honestly, if you want to be taken seriously, a change of attitude might help. After a quick re-read of the thread it seems to me that most of us on here have taken this topic seriously and treated it fairly and honestly.

I can't see the need for, or understand the purpose of, your outburst.

I read the thread from the beginning.

I've no idea what the rest of your post is getting at? You'll have to explain it to me.

[arison]

If you search under myalgic encephalopathy, you will find little research, since the accepted term is CFS (chronic fatigue syndrome) with over 4000 publications - research advances have been mainly hampered by indadequate definition of the syndrome under investigation, really only in the last decade or so has there been any agreement on the precise subgroup that was likely to have a single or small number of pathological causes.

As for MS - fatigue, depression and anxiety are indeed very important contributors to the symptom burden in this condition, it is however, very distinct because of the specific neurological lesions that in most cases lead to symptoms and findings that are readily distinguished from ME/CFS.

There is really no need to educate me. Ever ME sufferer who is able, is an expert on ME.

Fatigue depression and anxiety are a few of the symptoms for both conditions, and they are the least debilitating ones. Some ME patients have lesions on their brains.

The difference between MS and ME is the nerve ending damage is permanent in MS.

[arison]

There is a quite difference between saying "some people say they have ME..." and saying "everyone saying they have ME is making it up or imagining it".
A great deal comes down to the context in which it is said.

A person may say "some people say they have cancer in order to get sympathy" or "some people say they have back pain in order to skive off work" but that doesn't imply that the person saying it necessarily doesn't believe that cancer or back pain actually exist.

It was a general quote.

My point is - in the real world, I can't imagine anyone would feign illness to get benefits because in truth it's a degrading process, you receive little help and I sincerely do not understand how a genuinely sick person is expected to manage on such little money.

[arison]

If you search under myalgic encephalopathy, you will find little research, since the accepted term is CFS (chronic fatigue syndrome) with over 4000 publications - research advances have been mainly hampered by indadequate definition of the syndrome under investigation, really only in the last decade or so has there been any agreement on the precise subgroup that was likely to have a single or small number of pathological causes.
.

Which ever term you prefer to use, ME, CFS, Lyme, PVF - there has not been enough good research. In the last ten years the DOH has allocated a minimum of £8.5million to be used in ME services. You would expect the majority of that money to go to research right? Wrong. It went into opening local NHS CFS services to offer people suffering with ME/CFS whatever you chose to call it - Cognitive Behavioural therapy, if you were lucky. Most got a six week course on how to manage the disease. No drugs, no private therapy to deal with the devastating effects of dealing with a chronic illness, and no alternative therapies that have proven beneficial to deal with the symptoms of this disease.

Really you should be discussing why, on the advice of Simon Wessley who ignores biomedical research and believes ME to be in the mind, people are being left in poverty with little support.

People DO die from ME, they also die from Cancer and other opportune diseases because they are not offered any treatment to support low immunity.

[Pebble]

There is really no need to educate me. Ever ME sufferer who is able, is an expert on ME.

Fatigue depression and anxiety are a few of the symptoms for both conditions, and they are the least debilitating ones. Some ME patients have lesions on their brains.

The difference between MS and ME is the nerve ending damage is permanent in MS.

As an expert then perhaps you would care to educate me on the 'nerve ending' damage associated with demyelinating conditions? Hint - the myelin sheath only covers the axons, so any nerve ending damage is entirely consequential.

http://brain.oxfordjournals.org/content/120/3/393.long

[Pebble]

People DO die from ME, they also die from Cancer and other opportune diseases because they are not offered any treatment to support low immunity.

The road from symptoms through to treatment is a very long one. First being able to isolate the disease group of interest, then fully understanding the natural history of the right group, then (or in parrallel) understanding fully the protean manifestations, then the pathophysiology, developing adequate animal models, establishing reasonable therapeutic targets, initial pilot studies, proof of concept studies and then definitive DBRCTs to demonstrate efficacy. As a sufferer patience may not seem such a virtue, but years of bogus claims have convinced those who pay for the therapies that extreme caution is the order of the day, until the above hurdles have been overcome.