Re: is it time to give up and blame M.E.??

[Guest guest]

Hi Hazel,

Perhaps Sheila could have said some people but it maybe doesnt matter what word she used since she is in some ways right.

There is science out there which backs up her claim; in that a group of people dianosed with ME/CFS where they had specific symptoms used in the criteria of the study. when given treatment for hypothyroidism their symptoms improved and so too their condition. I think in the study I read there was one exception to this improvement; otherwise all but the one in the study group made improvements. I dont have the reference or link I'm afraid. Sorry.

However further, there are plenty of clinical observation studies wherreby like an audit the information was collected but not compared to a control group etc.

Broda made some of these observations and noted the conditions had only arisen since the introduction of the TSH blood test and use of thyroxine (synthetic form-pharmaceuticals); which happened to co-incide with each other in the 1970's and the new dieases/disorders such as those you mention.

So perhaps you are both correct in what you say. Certainly the symptoms are very similar to hypothyroidism and so too menopausal symptoms, PMS etc etc. I think the treatment of hypothyroidism should always be considered in such cases for sure. Sally xx

Hi Hazel - we have had this discussion before. Please note that I wrote "MOST people who have been given a diagnosis of ME, CFS or fibromyalgia….. " not ALL. The sentence I wrote is correct.

Luv - Sheila

- most people who have been given a diagnosis of ME, CFS or fibromyalgia have found that treatment using the active T3 gives them back their normal health again.

I’m sorry but that sentence is quite simply incorrect and misleading. ME has been classed by the World Health Organisation as a neurological condition for over 40 years; in reality it is a multi-system failure, a neuro-immune disease, affecting every system and part of the body. ME is characterised by neurological, immunological, gastrointestinal, cardiovascular and musculoskeletal features.

,___

[Guest guest]

Or some other (or more than one) undiagnosed, chronic condition.

A friend of mine recently had a diagnosis of Ehlers-Danlos syndrome, for

example, after years of being told she had M.E.

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

Miriam

> I think that was the point that was being made :-) - ie, some people are given

this (mis)diagnosis of ME when they are actually hypothyroid or have adrenal

issues all along.

[Guest guest]

As a computer programmer, I would say doctors are certainly not trained in

logical thinking and problem solving, and they don't understand the nature of

the statistical information they handle every day.

Maybe they should all be made to do computer programming for a couple of years

before being let loose on the general public?

If someone's computer doesn't work and you can't immediately find the problem,

you certainly don't say that there is nothing wrong. This is how doctors behave

when the standard lab tests they run don't throw any light on the situation.

Miriam

>

> When people with complex problems turn up at their doors that require real

thinking then most of them (the vast majority) can't do it. They aren't used to

doing it and they aren't trained to do it.

[Guest guest]

An excellent analogy Miriam.

Luv - Sheila

If someone's computer doesn't work and you can't immediately find the problem,

you certainly don't say that there is nothing wrong. This is how doctors behave

when the standard lab tests they run don't throw any light on the situation.

Miriam

---

[Guest guest]

I completely agree with what you say & others about not accepting the " ME "

label unless you have been *properly* tested for everything.

I was diagnosed with " post viral immune deficient chronic fatigue " nine years

ago and then I was left to rot.

I only got referred to haematology & gastroenterology for further testing

because I pushed for it! The only thing my GP referred me to was a ME clinic

where they used CBT (Cognitive behavioral therapy), all I can remember is the

person taking the group kept trying to get us to " accept our ill health " and

live the best we can with it!

I found it very depressing that I was being asked to accept that I would never

get better. Actually, I have always been determined to get better!

One of my close relatives has hypothyroidism and she has also been diagnosed

with ME.

Now in her 50's, she has been on thyroxine since she was a teenager, but she

attributes all her ill health to her ME because she believes her thyroxine is

treating her thyroid illness.

I have tried to explain that she needs further tests and that she may need more

than thyroxine but she seems to cling to her ME diagnosis.

I can't wait to give my diagnosis the boot!!

x

>

> One of the real problems with ME is that eventually because of a million

reasons some people begin to see ME as a badge that they wear that defines them.

This is their choice. I chose to say f**k it I don't believe I'm an ME patient.

Don't give me that label. Don't ask me to your ME support group. Yes, I know I

can't walk up my stairs at home without help. Yes, I know I have to sleep for 4

hours in the middle of each day. Yes, I know I pass out all the time and that I

can't do anything useful anymore. But NO, I don't have ME - LOOK AGAIN YOU

DORKS! GET SMART - INVESTIGATE.

>

> No, they didn't investigate. I did it myself and succeeded.

>

> Ex-ME diagnosed Patient

[Guest guest]

The mainstream GPs etc would prefer it if you gave up and went along with their

diagnosis of ME.

Several years on, I'm still trying to work all this out, how well it's possible

to be.

All I know is, despite doing the rests and pacing, I still had a persistent

annual decline. I know for a fact that thyroid and adrenal problems caused

severe bed-bound state and needing mobility aids.

Then there was an issue of muscle spasms and muscle solidness, which I know is

seperate and the Low Dose Naltrexone helps with that.

Then again, there is the issue of my weekly migraines, which I never had before

falling ill.

I am pretty sure that whatever they want to class ME/CFS as: It affects the

immunity and endocrine systems, some sort of downwards spiral/vicious circle,

making you more and more ill and it's down to us to sort the mess out.

There must be something to do with abnormalities at cellular level, not only in

terms of receptor blocks with thyroid hormones, but deficiencies at cellular

level, which showed up in mitochondrial testing.

By all accounts, you are fairly early on in your treatment. If not in time, but

options available. It can be hard to get on optimum thyroid meds. For example

you can have a spell doing pretty well, then they reduce your dose, you name it

can happen.

They are fond of saying your bloods are fine, when as already said it could be a

conversion, or receptor block issue. Then you are on T3, and then there is

controversy about suppressed TSH.

So even if you get to the point when you have fully exhausted thyroid and

adrenals, there could be something else to help.

I am on a long list of supplements as well as thyroid meds. But they have all

been advised professionally following tests, rather than just off my own

initiative.

Vit D

Vit E

Glutathione

Magnesium

Vit C

Selenium

Nutri Adrenal Extra

Q10

(I think that's about it ha-ha).

Fiona

[Guest guest]

thankyou for all the replies, too many to answer in the rush now, but wanted to

acknowledge them. Great chat

Carole

>

> The ME diagnosis has obvious touched a nerve with a lot of people.

> It certainly brings it all back to me.

>

>

[Guest guest]

I will add something interesting to this discussion. Here is a poll conducted on

a site for people suffering ME/CFS:

http://forums.phoenixrising.me/showthread.php?2012-What-Is-Your-Body-Temperature\

-Rethinking-98.6 & highlight=temperature

As you can see upwards of 70% have a low body temperature. They all have the

symptoms of hypothyroidism because they are the same as those of ME/CFS.

Sometimes I think we could do a much better job if " Thyroid " charities were

actually called " CFS " charities, because CFS/ME people never think to come to

thyroid charities, because they have all been told their thyroid is fine...

Mark

-

[Guest guest]

You might have a point there Mark.

Luv - Sheila

I will add something interesting to this

discussion. Here is a poll conducted on a site for people suffering ME/CFS:

http://forums.phoenixrising.me/showthread.php?2012-What-Is-Your-Body-Temperature-Rethinking-98.6 & highlight=temperature

As you can see upwards of 70% have a low body temperature. They all have the

symptoms of hypothyroidism because they are the same as those of ME/CFS.

Sometimes I think we could do a much better job if " Thyroid "

charities were actually called " CFS " charities, because CFS/ME people

never think to come to thyroid charities, because they have all been told their

thyroid is fine...

Mark

-

[Guest guest]

Hi I remember one endo described himself as a scientist . It was written in such

a way one would think medicine was not a science . Well to be a scientist you

need to be open minded , be prepared to search for answers ,to admit finding

answers is not always easy and be able to admit you are wrong . So what exactly

do some of these doctors practice ?