health providers - Something I just dont get!!

[Large Donner]

This just makes no sense to me, the below information is taken directly from the NHS on Encephalitis and it goes into some detail about viral onset, infectious and post infectious states, autoimmune issues, fatigue, joint pain, confusion drowsiness etc etc and how its can cause long term damage or be fatal etc. It even talks about chronic states where "inflammation develops slowly over many months and can be due to a condition such as HIV; in some cases, there's no obvious cause".

It talks about tick borne onsets also.

Yet mention ME which seems to describe pretty much the same thing as the below content does and its "controversial" and should be treated with CBT and GET.

Why does the NHS pretend that all of the above when under an ME or CFS banner is so "mysterious" and then go as far to allow NICE etc to treat it like a psychological issue? How can they possibly get away with pretending all of those issues when taken down in a patient history have no significance.

Isn't this Encephalitis issue the easiest challenge to the "evidence based" issues put down as blocks for accepting ME?

If there's Encephalitis its a precedent in medicine and science isn't it for accepting ME is "encephalitis" or at least that there's no "mystery" surrounding accepting such a mechanism for ME?

http://www.nhs.uk/Conditions/Encephalitis/Pages/Introduction.aspx

Introduction
Encephalitis is a rare but serious condition that causes inflammation of the brain.

It usually begins with flu-like symptoms, such as a high temperature,headache and joint pain.

More serious symptoms may then develop over the next few hours or days, including:

• changes in mental state, such as confusion, drowsiness or disorientation
• seizures (fits)
• changes in personality and behaviour

Flu-like symptoms that rapidly get worse and affect mental state should be treated as a medical emergency. Dial 999 immediately to request an ambulance.

Read more about the symptoms of encephalitis.

What causes encephalitis?
There are several different types of encephalitis and each type has a different cause. The most common types of encephalitis are:

• infectious – inflammation occurs as a direct result of an infection, which is often viral
• post-infectious – inflammation is caused by the immune system reacting to a previous infection, and can occur days, weeks or months after the initial infection
• autoimmune – inflammation is caused by the immune system reacting to a non-infectious cause, such as a tumour
• chronic – inflammation develops slowly over many months and can be due to a condition such as HIV; in some cases, there's no obvious cause

There are also several types of encephalitis spread by mosquitoes, such as Japanese encephalitis, and ticks, such as tick-borne encephalitis. Encephalitis can also be caused by rabies.

Read more about the causes of encephalitis.

In the UK, all types of encephalitis are relatively rare. The Encephalitis Society estimates that there are 4,000 case of encephalitis in the UK each year.

Anyone can be affected by encephalitis, but the very young and the very old are most at risk, because their immune systems tend to be weaker.

Treating encephalitis
Encephalitis needs urgent treatment, usually in a hospital intensive care unit (ICU). The earlier it's diagnosed, the more successful treatment is.

Treatment depends on the type of encephalitis you have, but may include:

• anti-viral medication
• steroid injections
• immunosuppressants (medicines that stop the immune system attacking healthy tissue)

Read more about diagnosing encephalitis and treating encephalitis.

Complications
Some people make a full recovery after having encephalitis. However, for many it can lead to permanent brain damage and complications, including:

• memory loss
• epilepsy
• personality and behavioural changes
• problems with attention, concentration, planning and problem solving
• fatigue (extreme tiredness)

Overall, about 10% of encephalitis cases are fatal.

Read more about the complications of encephalitis.

Preventing encephalitis
It's not always possible to prevent encephalitis. This is because it can be a rare complication of a relatively common infection.

The most effective way to reduce your risk of getting encephalitis is to ensure you have the MMR vaccine (for measles, mumps and rubella).

Practicing good hygiene – for example, regularly washing your hands with soap and warm water can help to reduce your risk of developing common infections.

Other vaccinations
Vaccinations are also available for Japanese encephalitis, tick-borne encephalitis and encephalitis caused by rabies.

These types of encephalitis are rare in the UK, but more widespread in certain parts of the world. For example, rabies tends to be more common in Africa, Japanese encephalitis is more common in Asia, and the risk areas for tick-borne encephalitis are the forests of central, eastern and northern Europe.

You should discuss these specific vaccinations with your GP before travelling.

Read more about the Japanese encephalitis vaccination, preventing tick-borne encephalitis and the rabies vaccination.

 

[Effi]

@Large Donner There's a difference between what we call M.Encephalitis, and something called acute encephalitis. (Btw, a very old name for ME used to be benign encephalitis, benign meaning non fatal.) The acute version can be quickly fatal, instantly put you in a wheelchair, etc. There's sometimes people from encephalitis advocacy groups who protest against us using the term ME cause they say that's not what we have and we're misusing 'their' term. I don't know enough about it to really explain it in depth, but my doctor says the same thing, that encephalitis is commonly used for a very acute and fatal illness, and that the term ME isn't largely accepted for that reason. (I don't agree with this, just saying what I've heard.) It's just so confusing.

 

[heapsreal]

Also a chronic meningitis form called mollaret's meningitis , which is caused by herpes type1 and 2 as well as vzv. They say its subclinical with episodes of reactivation etc these people function at the same level as cfsme , may even be a subset of cfsme. Not many drs would even test for it or know how to test for it.

look up natutal killer cell defiency disease, how is
It so different from the low nk function of many mecfsers. Treatment is antivirals to help prevent herpes viruses ebv, cmv etc from reactivation.

So many of these conditions arent much different to cfsme or probably subset of, but i think one has to be lucky enough to find a dr who can confidently diagnoses these conditions. So many patients are never really given a diagnosis,maybe drs dont want to label a patient out of fear of being wrong or something ? ??

 

[Living Dead]

ME = myalgic encephalomyelitis, not encephalitis.

Wikipedia says: Encephalitis is an acute inflammation of the brain.
Encephalomyelitis is a general term for inflammation of the brain and spinal cord, describing a number of disorders:

 

[ScottTriGuy]

...

Yet mention ME which seems to describe pretty much the same thing as the below content does and its "controversial" and should be treated with CBT and GET.

...

I had a psychiatrist the other day try to tell me that m.e. diagnosis was 'controversial' - I interrupted him and corrected him:

What's controversial is that the medical system and (some) doctors are ignoring the biological evidence and continue to harm patients.

He was slightly taken aback that I had re-framed the 'issue' and putting the onus on the medical system to justify their harmful behaviour.

 

[Effi]

encephalitis, encephalomyelitis, or encephalopathy? Hard to know who means what when saying ME. Interesting read (though slightly dated):
http://www.meassociation.org.uk/201...yalgic-encephalopathy-on-the-new-mea-website/

 

[barbc56]

encephalitis, encephalomyelitis, or encephalopathy? Hard to know who means what when saying ME. Interesting read (though slightly dated):
http://www.meassociation.org.uk/201...yalgic-encephalopathy-on-the-new-mea-website/

Yeah, I certainly didn't know the difference. I've probably been misusing these terms. Good info to know.

Thanks to all who posted for the information!

Barb

 

[minkeygirl]

When I first got sick 20 plus years ago, a doc I was seeing used the term "static encephalopathy" on disability forms. I asked him what it meant. It meant I got my disability, that's what it meant.

 

[WillowJ]

Right, encaphalitis is an acute, severe illness. It would come with very severe symptoms. Not simply, I got the flu and I never got better. It would be, I had the flu (or some other infection) and I had these severe symptoms, and I never got better.

But there are some of us who did have acute encephalitis. However we're still stuck with CFS, the oh-so-mysterious disease that most do not want to treat or research.

 

[Large Donner]

Right, encaphalitis is an acute, severe illness. It would come with very severe symptoms. Not simply, I got the flu and I never got better. It would be, I had the flu (or some other infection) and I had these severe symptoms, and I never got better.

But there are some of us who did have acute encephalitis. However we're still stuck with CFS, the oh-so-mysterious disease that most do not want to treat or research.

Bingo!!

That's the point was trying to make when I posted the thread. Take out the naming issues, poor history taking by doctors and also remember alot of "diagnosis" are made subjectively often depending on which tests where ordered, the attitude of the original diagnosing physician, our lack of understanding about instant onset or slow onset, etc etc.

To me its less about "....itis" "....opothy myelitis" etc etc its about people getting ill from viral bacterial onsets and then staying ill for a long time with neurological symptoms, pain, and "fatigue".

Alongside this, tic bites, autoimmune issues, etc etc being well known and long since accepted to produce such symptoms on a varying spectrum is the whole point in the issue. Also what they can do to the central nervous symptom be it the brain or the spinal cord.

I understand all the defining issues around ME and what it should stand for but isn't that a separate issue from the precedents set in medicine for a basic physical illness acceptance?

It goes like this as far as I am concerned...

1) "viral and bacterial insults and even less obvious physical triggers can cause pain, drowsiness, long lasting fatigue, cognition issues autoimmune problems, paralysis, headaches, etc etc indefinitely and we can treat that with antiviral meds and a host of other things ".... Basic long accepted medical fact!!!!

2) "viral and bacterial insults and even less obvious physical triggers CANNOT cause pain, drowsiness, long lasting fatigue, cognition issues autoimmune problems, paralysis, headaches etc etc indefinitely...... when we don't do any medical tests and suddenly forget the trigger may not be obvious and tell you by default you have CFS or ME"

So unless you have the version of viral/ bacterial, tic bites or unknown caused insults that can be fatal immediately and you die within a few days you are fine. If you just have to endure all of those above symptoms for ever then its nothing.

Only "mental illnesses" have a spectrum.

 

[barbc56]

You know, and Ive said this before. If me/cfs were depression, I would go down that road without hesitation, to get better.

BUT IT'S NOT, I've had both and they are qualitatively different.

Depression from a chronic disease, is not the same and if you didn't feel down, you wouldn't be human. There are therapist who deal with chronic medical conditions and in my experience nothing was even mentioned that it's an illness believe.

My therapy was short term. It was mostly how to work around my illness, ways to handle the impact it can have on relationships and hooking you up with so social services if needed. Also some coping skills which has helped others. Included were helping me process what is going on to help me to come up with strategies.

I've had depression, even before this illness. Fortunately, it's pretty much been resolved with psychotropic medications and this time of year with light therapy. Also getting treatment to improve sleep. But you have to make sure you're on top of it and sometimes the medication needs to be tweeted. I also can't take certain psychotropic medicines such as SSNRI.

I currently see a therapist on an as needed basis. It's for a different issue which sometimes incldes any impact this may have on my current situation.

Barb