Re: New study by Dr Myhill proves ME/CFS is physical

[Guest guest]

Hi Pam, looks good :0), but we know how the psychiatrists will

react:0(

best wishes keith

>

>

> International Journal of Clinical and

> Experimental Medicine

>

> IJCEM -All rights reserved. Published by e-Century

> Publishing Corporation, Madison, WI 53711

>

> Int J Clin Exp Med 2(1):1-16,2009

>

> Original Article

> Chronic fatigue syndrome and mitochondrial dysfunction

>

> Myhill, Norman E. Booth, McLaren

>

> Myhill Limited, Llangunllo, Knighton, Powys, Wales LD7 1SL,

> U.K.; Department of Physics and Mansfield College, University of

> Oxford, Oxford OX1 3RH, U.K.; Acumen, PO Box 129, Tiverton, Devon

> EX16 0AJ, U.K.

>

> Received December 3, 2008; accepted January 12, 2009; available

> online January 15, 2009

>

> Abstract: This study aims to improve the health of patients

suffering

> from chronic fatigue syndrome (CFS) by interventions based on

> the biochemistry of the illness, specifically the function of

> mitochondria in producing ATP (adenosine triphosphate), the energy

> currency

>

[Guest guest]

Hi Pam

The Link is here

and saves as:-

http://www.ijcem.com/files/IJCEM8120012.pdf

http://www.ijcem.com/812001A.html

Bob

>> > International Journal of Clinical and > Experimental Medicine> > IJCEM -All rights reserved. Published by e-Century > Publishing Corporation, Madison, WI 53711> > Int J Clin Exp Med 2(1):1-16,2009> > Original Article> Chronic fatigue syndrome and mitochondrial dysfunction> > Myhill, Norman E. Booth, McLaren > > Myhill Limited, Llangunllo, Knighton, Powys, Wales LD7 1SL, > U.K.; Department of Physics and Mansfield College, University of > Oxford, Oxford OX1 3RH, U.K.; Acumen, PO Box 129, Tiverton, Devon > EX16 0AJ, U.K.> > Received December 3, 2008; accepted January 12, 2009; available > online January 15, 2009> > Abstract: This study aims to improve the health of patients suffering > from chronic fatigue syndrome (CFS) by interventions based on > the biochemistry of the illness, specifically the function of > mitochondria in producing ATP (adenosine triphosphate), the energy > currency > for all body functions, and recycling ADP (adenosine diphosphate) to > replenish the ATP supply as needed. Patients attending a private > medical practice specializing in CFS were diagnosed using the Centers > for Disease Control criteria. In consultation with each patient, > an integer on the Bell Ability Scale was assigned, and a blood sample > was taken for the "ATP profile" test, designed for CFS and other > fatigue conditions. Each test produced 5 numerical factors which > describe the availability of ATP in neutrophils, the fraction > complexed > with magnesium, the efficiency of oxidative phosphorylation, and the > transfer efficiencies of ADP into the mitochondria and ATP into the > cytosol where the energy is used. With the consent of each of 71 > patients and 53 normal, healthy controls the 5 factors have been > collated and compared with the Bell Ability Scale. The individual > numerical factors show that patients have different combinations of > biochemical lesions. When the factors are combined, a remarkable > correlation is observed between the degree of mitochondrial > dysfunction and the severity of illness (P<0.001). Only 1 of the 71 > patients overlaps the normal region. The "ATP profile" test is a > powerful diagnostic tool and can differentiate patients who have > fatigue and other symptoms as a result of energy wastage by stress > and psychological factors from those who have insufficient energy due > to cellular respiration dysfunction. The individual factors indicate > which remedial actions, in the form of dietary supplements, drugs and > detoxification, are most likely to be of benefit, and what further > tests should be carried out. (IJCEM812001).> > Key Words: Chronic fatigue syndrome; myalgic encephalomyelitis; > patient care; mitochondria; neutrophils, oxidative phosphorylation.> > Full Text PDF> > Address all correspondences to: Norman E. Booth, PhD, Department of > Physics and Mansfield College, University of Oxford, Oxford > OX1 3RH, U.K. Or: `Applegate', Orchard Lane, East Hendred, Wantage > OX12 8JW, U.K, Telephone: +44 (0)1235 833486, E-mail: n.> booth1@...>

[Guest guest]

Good study (what parts of it I could understand).

Wouldn't mind having my ATP looked at like that. However, doubt if

anyone would know how to treat it if they found anything, at least not

in my neck of the woods.

Good to know that Dr Myhill is getting studies like this out though.

luv

Dawnx

[Guest guest]

Hi Dawn,

By knowing what to treat, she's able to know 'how' to treat..very

simple...

get the wrong diagnosis and you'll always treat the patient badly.

has done well in treating her patients with ME/CFS because she's

done the ground-work.

Guys at Newcastle (Turnbull et el) may be able to help with

mitochondrial diseases.

best wishes

Bob

>

> Good study (what parts of it I could understand).

>

> Wouldn't mind having my ATP looked at like that. However, doubt if

> anyone would know how to treat it if they found anything, at least not

> in my neck of the woods.

> Good to know that Dr Myhill is getting studies like this out though.

>

> luv

> Dawnx

>

[Guest guest]

Newcastle , do they have a clinic do you know Bob? Quite far though

but we are getting more local lol.

I would have liked to have seen Dr Myhill, I read about her work first

before I got into the thyroid connection. She was too far away again

though, and of course I would have had to also pay privately again.

Way beyond my budget all that travel and fees.

It was from Dr Myhill I got the tip to use D Ribose and Q10 and other

stuff which unfortunately didn't seem to work for me, but that was

about 3 years ago.

lotsa luv

Dawnx

[Guest guest]

We had a talk at our local M E group recently from the woman in charge

of NHS M E services in our area. One thing that she threw in was that

the ATP test was unreliable. Obviously, as she is only a

psychologist, she is not in a position to know that, but it is what

she must have been told from her NHS sources of information. " None so

deaf as those that won't hear " , as my grandmother used to say!

Miriam

>

> Hi Pam, looks good :0), but we know how the psychiatrists will

> react:0(

> best wishes keith

[Guest guest]

Hi

Interesting stuff. I did the ATP Profile 2 years ago and was found to

have poor ATP to ADP conversion and overall poorly functioning

Mytochondria. Finally, we have an objective test for CFS/ ME. I would

recommmend this test if you can afford it.

[Guest guest]

Hi Dawn

I think you would qualify for NHS testing with your condition, but

that's only 'my' opinion!

What your doctor might suggest is another thing.

Could you get a referal for something that is obviously a complicated

diagnosis?

Phone them direct for a 'first' contact, perhaps.

Just recently, they published (Newcastle) that mitochondrial disease is

far more prevalent than was at first thought.

best wishes

Bob

>

> Newcastle , do they have a clinic do you know Bob? Quite far though

> but we are getting more local lol.

> I would have liked to have seen Dr Myhill, I read about her work first

> before I got into the thyroid connection. She was too far away again

> though, and of course I would have had to also pay privately again.

> Way beyond my budget all that travel and fees.

> It was from Dr Myhill I got the tip to use D Ribose and Q10 and other

> stuff which unfortunately didn't seem to work for me, but that was

> about 3 years ago.

>

> lotsa luv

> Dawnx

>

[Guest guest]

>

> Hi Pam, looks good :0), but we know how the psychiatrists will

> react:0(

> best wishes keith

>

Hi

I don't see how they can argue about this when the test involves a

simple blood test.

I had the test done about 4 years ago and my ATP was only 1.2 and

considered low. Also there was poor conversion of ADP-ATP at 48% but

the Translactor was normal.

The following year I had the test to see what was blocking the

mitochondria, its called The Translactor Study and it showed there

was a trace of lindane plus high DNA/RNA which Dr McClaren

considered viral. Other tests through Dr show that my SOD

enzyme which is important in detoxifying free radicals has low enzyme

activity and the enzyme involved with glutatione called Glutatithione

Peroxidase also has poor enzyme activity. Over the past 2 years

there has been no improvement despite me taking a ton of good quality

supplements including 100 mg zinc daily I am still deficient, same

for selenium.

After re-reading Andy Cutler's book on Amalgam Illness

(www.noamalgam.com) I have come to the conclusion I am still poisoned

with mercury and this is behind my thyroid/adrenal/poor ATP problem

so I am going to restart a proper chelation programme to get the

mercury and nickel out. My red blood cell nickel has actually gone

up over the last 2 years and is still over range but maybe that is

because I am actively detoxifying every day especially when I use my

Infra Red Sauna.

I don't know how psychiatrists can say I have a psychological problem

when all my tests point to problem including tests showing high

levels of heavy metals which are still affecting my immune system.

I firmly believe everybody is poisoned to a greater or lesser degree

its just some have much better detoxification systems than I do.

Shame the NHS knows nothing about the genetic individuality of the

detoxification system we inherit.

BW

Pam

[Guest guest]

>

> We had a talk at our local M E group recently from the woman in charge

> of NHS M E services in our area. One thing that she threw in was that

> the ATP test was unreliable. Obviously, as she is only a

> psychologist, she is not in a position to know that, but it is what

> she must have been told from her NHS sources of information. " None so

> deaf as those that won't hear " , as my grandmother used to say!

>

> Miriam

>

Hi Miriam

That' an absolutely typical reaction of somebody who works in the NHS

and why nobody gets better from ME/CFS if they rely on the NHS in fact

they will be made worse if they are put on an exercise program if they

have underfunctioning mitochondria as Dr Myhill writes.

I am the Chairman of my local Fibromyalgia Support Group and it breaks

my heart to see lovely people (mainly women) turn up with their sticks

and mostly in pain. ALL of them are under the NHS and are filled with

very powerful drugs like amitriptolene which could do more harm than

good and doesn't treat the reason why they are ill.

Obviously I have to let them know that there is an alternative way of

dealing with this but it is considered controversial but I let them

know that the first step is to have a full thyroid panel done, the

problem is they are often refused this on the NHS and because they are

on benefits they cannot afford the private tests.

Its just an appalling situation but I do everything I can to at least

raise awareness and if at least one person is helped it will be worth

it.

BW

Pam

[Guest guest]

I wouldn't say it was a way to identify M E because you can get poor

ATP production with low thyroid as well. As the NHS seems to be

rubbishing the test they are not going to use it for diagnostic

purposes. (I suppose this is logical because if they accepted the

test they would have to offer it themselves.) Then the only reason

for having it done would be to try the treatment (supplement D-ribose,

magnesium, Co-enzyme Q10, and acetyl L-carnitine as necessary). I

don't think it is the best use of £245, though it is great this study

has been published.

http://www.drmyhill.co.uk/article.cfm?id=381

Miriam

> Interesting stuff. I did the ATP Profile 2 years ago and was found to

> have poor ATP to ADP conversion and overall poorly functioning

> Mytochondria. Finally, we have an objective test for CFS/ ME. I would

> recommmend this test if you can afford it.

>

>

[Guest guest]

Hi Miriam

For the NHS, it would be very good value for money, since it would

prevent a lot of future claims for negligence when the entire medical

profession has abdicated responsibility for finding out why people are

so ill for so long; a la " Functional Somatoform Disorder " ~

ugh, spit, wash your mouth out ~ using the words makes me retch...

.....a touch of humility by Prof Weetman wouldn't go amiss, 'cept he

didn't get elected by his 'subjects'.

A " New Deal ~ Thyroid Policy " day has just been inaugurated, in the

presence of the entire sub~clinical hypothyroid population of

England......

yer see, it's only the English that tolerate subjugation by the

nobiliT4y ~ just as long as they get their few crumbs that fall off

the high table.

best wishes

Bob

> > Interesting stuff. I did the ATP Profile 2 years ago and was found to

> > have poor ATP to ADP conversion and overall poorly functioning

> > Mytochondria. Finally, we have an objective test for CFS/ ME. I would

> > recommmend this test if you can afford it.

> >

> >

>

[Guest guest]

Hi Pam, you wrote: I don't see how they can argue about this when the test involves a simple blood test.> > > I don't know how psychiatrists can say I have a psychological problem > > BW> Pam

They will argue against this approach of diagnoses to protect their influence in this field, they get millions of pound in government funding for research and treatment. I always considered the medical profession to be a caring profession until I started getting hypo symptoms and inconclusive blood tests (by their criteria). now I think most doctors are completely indifferent to suffering. The articles below go to prove the point:A physician's view: medical training means learning how to be calloushttp://209.85.229.132/search?q=cache:C0BZW7T0oyUJ:www.independent.co.uk/life-style/health-and-wellbeing/health-news/a-physicians-view-medical-training-means-learning-how-to-be-callous-

CADAVER EXPERIENCEShttp://news.bbc.co.uk/1/hi/health/2595575.stm

Symptoms of depression 'widespread among medical students'http://www.telegraph.co.uk/health/healthnews/3548132/Symptoms-of-depression-widespread-among-medical-students.html

After reading these you could well ask, do only callous students make it through medical training, with just a few exceptions?Is it a case of not the maniacs taking over the asylum but being in charge all along.Best wishes keith.

[Guest guest]

I recently weren't for a consultation with the local NHS M.E.Clinic.

There was nothing on offer in the way of tests or tx and now they

want me to go and see their occupational therapist and join their

group of other people with similar health problems.

I don;t know what happens there, probably graded exercise or

something.

Has anyone been to one of these clinics?

Mo

> For the NHS, it would be very good value for money, since it would

> prevent a lot of future claims for negligence when the entire

medical

> profession has abdicated responsibility for finding out why people

are

> so ill for so long; a la " Functional Somatoform Disorder " ~

> ugh, spit, wash your mouth out ~ using the words makes me retch...

>

> ....a touch of humility by Prof Weetman wouldn't go amiss, 'cept he

> didn't get elected by his 'subjects'.

>

>

[Guest guest]

Hi Mo

I would be interested too as we are also based in Devon and are just

at the beginning of trying to sort out my daughter's problems. My

daughter recently had her first consultation with the local NHS

Specialist GP in CFS/ME in the South Devon area. We are waiting for a

follow up letter which will advise on supplements but I got the

impression that there was no treatment apart from management and I

think he has invited us to attend a seminar or something about all

this. I think he said there was nothing that NICE has designated to be

prescribed for the condition.

I tried to talk to him about thyroid and adrenal dysfunction but there

didn't seem to be anything he could do. He talked so much and for so

long, we both felt fatigued and unable to concentrate by the time he

had finished!

Before this appointment, after discovering this site and getting

advice from Sheila, I asked my daughter's GP to refer her to a thyroid

specialist and she is due to see an endocrinologist in Feb. It is all

up in the air at the moment as I don't know if we will get any joy

from this course of action.

Jo

-- In thyroid treatment , " Mo Osborne "

<moosborne@...> wrote:

>

> I recently weren't for a consultation with the local NHS M.E.Clinic.

> There was nothing on offer in the way of tests or tx and now they

> want me to go and see their occupational therapist and join their

> group of other people with similar health problems.

> I don;t know what happens there, probably graded exercise or

> something.

> Has anyone been to one of these clinics?

>

> Mo

[Edit Abbrev Mod]

[Guest guest]

I think the crux of the matter is that governments and the

pharmaceutical/chemical industry don't want to admit that people are

being made ill by environmental toxins. A good book on the subject is

" Our Stolen Future " by Theo Colborn et al. Chemicals are often tested

for their carcinogenic effect, but not usually for whether they can

act as an endocrine disruptor.

There are several groups in this situation: probably many of us

suffering from peripheral thyroid problems, farmers and others with

organophosphate poisoning, sufferers from Gulf War Syndrome, people

with M E and fibromyalgia, probably M S, and maybe more.

Look at what happened when the people in Camelford, Cornwall, were

poisoned by aluminium being dumped in their drinking water. You would

think that was a quite clear cut and indisputable case of poisoning,

but they have had an appalling struggle to get recognition of their

health problems, let alone any treatment.

Eventually problems will become so severe and widespread that

something will have to be done, but at the moment we are caught in an

awkward political situation.

Miriam

>

> For the NHS, it would be very good value for money, since it would

> prevent a lot of future claims for negligence when the entire

medical profession has abdicated responsibility for finding out why

people are so ill for so long

[Guest guest]

I went to our local M E clinic here in Bristol. We had about 6

fortnightly group sessions with one follow-up session about 6 months

later. Initially we had to complete a questionnaire about our health

and activity levels. This was repeated later to see whether our

scores had improved as a result of doing the course as these centres

have to provide " evidence " to justify their funding.

I had been ill for many years before attending, so really there was

nothing they could tell me which I hadn't worked out for myself about

how to manage my condition. However, if you were newly diagnosed it

might be useful. In some cases it gave people the confidence to tell

their families that they couldn't carry on as normal, for example.

Fortunately they didn't make us do any graded exercise therapy. We

had sessions on pacing and on cognitive behavioural therapy. The best

thing about it was meeting other sufferers and they were the best

source of helpful information. I am still friends with some of the

people I met on the course.

It is worth going along with whatever they suggest at the clinic

unless you are sure it will be harmful because afterwards they send a

report to your GP which basically assesses how co-operative you have

been. I received a copy and it made me feel like a 5 year old getting

a headmaster's report.

The best thing I have heard about this clinic is that they will

educate GPs who are ignorant about M E and treating their patients as

malingerers. The worst thing is that they actively discourage people

from trying to discover what is physically wrong because they seem to

somehow believe that helps to perpetuate the illness.

Miriam

> I recently weren't for a consultation with the local NHS M.E.Clinic.

> There was nothing on offer in the way of tests or tx and now they

> want me to go and see their occupational therapist and join their

> group of other people with similar health problems. I don;t know

what happens there, probably graded exercise or something.

> Has anyone been to one of these clinics?

[Guest guest]

The consultant I saw poo-poo'd supplements so you are doing

marginally better with your guy by the sounds of it.

He said he was concerned about me wasting my money. He had no time

for Dr Peatfield-s diagnosis and myc urrent tx either and wrote and

said so to the GP, that I should come off my tx as it was m aking me

ill. He was referring to the palpitations that I had been taking

betablockers for and it transpired over Christmas that food

sensitivity was the cause of these palpitations so he was talking

through his bot-bot

I felt degraded and invaded by the inquisition I experienced at this

consultation, horrendously personals question, no physical

examination and no possibility of any medical testing or tx. He was

very bullying and demanded to know a date when I would relinquish my

thyroid meds.

I don't hold out much hope of them being able to help me. Their admin

person told me that the problem is that they have very little in the

way of funding and they would like to be able to offer more.

Has your daughter had any testing done Jo?

You may have to jump through a few more hoops to get the right

treatment but you are well-placed now to get this, one way or the

other. Don't let the NHS decide what is right for your daughter is

what I would say. If they can meet your needs, fine and well. If they

cannot, then there are other options.

Your daughter will get what she needs one way or the other and that

is the main thing.

Mo

> I would be interested too as we are also based in Devon and are just

> at the beginning of trying to sort out my daughter's problems. My

> daughter recently had her first consultation with the local NHS

> Specialist GP in CFS/ME in the South Devon area. We are waiting for

a

> follow up letter which will advise on supplements but I got the

> impression that there was no treatment apart from management and I

> think he has invited us to attend a seminar or something about all

> this. I think he said there was nothing that NICE has designated to

be

> prescribed for the condition.

>

> I tried to talk to him about thyroid and adrenal dysfunction but

there

> didn't seem to be anything he could do. He talked so much and for so

> long, we both felt fatigued and unable to concentrate by the time he

> had finished!

>

> Before this appointment, after discovering this site and getting

> advice from Sheila, I asked my daughter's GP to refer her to a

thyroid

> specialist and she is due to see an endocrinologist in Feb. It is

all

> up in the air at the moment as I don't know if we will get any joy

> from this course of action.

> Jo

[Edit Abbrev Mod]

[Guest guest]

Thank you Miriam. This is as I suspected you know.

My worry is that if I do not go along (and I have missed two

appointments, the initial ones with the occ. therapist through

illness) that my DLA will be in jeopardy.

And, from what you say, I am thinking that is a possibility because

if they are making judgements on my level of cooperation, then they

could well assume that I have 'failed' to try hard enough to get

myself well!

Hmmm.

Mo

>

> I went to our local M E clinic here in Bristol. We had about 6

> fortnightly group sessions with one follow-up session about 6 months

> later. Initially we had to complete a questionnaire about our

health

> and activity levels. This was repeated later to see whether our

> scores had improved as a result of doing the course as these centres

> have to provide " evidence " to justify their funding.

>

> I had been ill for many years before attending, so really there was

> nothing they could tell me which I hadn't worked out for myself

about

> how to manage my condition. However, if you were newly diagnosed it

> might be useful. In some cases it gave people the confidence to

tell

> their families that they couldn't carry on as normal, for example.

>

> Fortunately they didn't make us do any graded exercise therapy. We

> had sessions on pacing and on cognitive behavioural therapy. The

best

> thing about it was meeting other sufferers and they were the best

> source of helpful information. I am still friends with some of the

> people I met on the course.

>

> It is worth going along with whatever they suggest at the clinic

> unless you are sure it will be harmful because afterwards they send

a

> report to your GP which basically assesses how co-operative you have

> been. I received a copy and it made me feel like a 5 year old

getting

> a headmaster's report.

>

> The best thing I have heard about this clinic is that they will

> educate GPs who are ignorant about M E and treating their patients

as

> malingerers. The worst thing is that they actively discourage

people

> from trying to discover what is physically wrong because they seem

to

> somehow believe that helps to perpetuate the illness.

>

> Miriam

[Edit Abbrev Mod]

[Guest guest]

Here is a seminar to watch, gave me something to do.

He seems to know what he is talking about, however, I worry about his

giving people on SSRis 5Http in high doses. Seratonin syndrome etc? We

may not have much seratonin but we do have it holding up there in our

brains longer.

Other things he says make a lot of sense. on ME\FM

For anyone who didn't see the post from another lady on the STTM

site, here is the link (apologies to lady I forgot ur name but that is

the nature of the disease, I am sure you understand :-) )

http://www.treatingandbeating.com/

lotsa luv

Dawn

PS Thanks Bob, I will try and get a consultation with these people or

at least speak to them :)x

[Guest guest]

Hi Mo

My daughter's GP tested her on my request to see if she

was anaemic as she has had fatigue for ages and ages. She has lowish

ferritin and is on one iron tablet a day (if she remembers to take

it). From reading Dr Peatfield's comments on low ferritin treatment,

I think she should be taking 2-3 tablets so will suggest she

increases the dose to get her ferritin levels up more quickly.

I made a number of phone calls and appointments for my daughter over

the past 3 years relating to fatigue, stress and anxiety, dificulty

coping with college and uni etc ever since she had glandular fever.

She also had some stress and anxiety issues the year before

glandular fever as there have been a lot of major life events that

affected her and she may also have been having other physical things

going on, who knows, especially as she has a history of vitiligo

(the GP was unaware of this so can't have checked her records very

carefully)

I then asked for a referal to an ME specialist (after surfing the

net trying to make sense of things) which prompted a few more tests

prior to going to rule out other things including thyroid function,

but I must find out what was actually tested. I have the records but

they mean nothing to me and were apparently well within normal

range.

I too got the impression from the ME specialist that

there was little funding or treatment of any kind available.

After discovering this site and getting advice and info from Sheila,

I asked for referal to a thyroid/adrenal specialist because of the

vitiligo history and all the symptoms she has. I have also made an

appointment for her to see Dr Peatfield. I am not sure what tests

the NHS will offer and we may have to get some done privately,

although I don't know how this works if you need blood tests doing.

It all sounds very expensive (on a low income) but health is

paramount. Any advice about this would be good.

Jo

>

> The consultant I saw poo-poo'd supplements so you are doing

> marginally better with your guy by the sounds of it.

Has your daughter had any testing done Jo?

> You may have to jump through a few more hoops to get the right

> treatment but you are well-placed now to get this, one way or the

> other. Don't let the NHS decide what is right for your daughter is

> what I would say. If they can meet your needs, fine and well. If

they

> cannot, then there are other options.

> Your daughter will get what she needs one way or the other and that

> is the main thing.

>

> Mo

>

[Guest guest]

As

I stated before Jo, I believe Dr Myhill treats with minerals, vitamins and

pacing - but she never uses T3, which many doctors have found works for people

suffering with these conditions.

Luv

- Sheila

.. My

daughter recently had her first consultation with the local NHS

Specialist GP in CFS/ME in the South Devon area. We are waiting for a

follow up letter which will advise on supplements but I got the

impression that there was no treatment apart from management and I

think he has invited us to attend a seminar or something about all

this. I think he said there was nothing that NICE has designated to be

prescribed for the condition.

I tried to talk to him about thyroid and adrenal dysfunction but there

didn't seem to be anything he could do. He talked so much and for so

long, we both felt fatigued and unable to concentrate by the time he

had finished!

Before this appointment, after discovering this site and getting

advice from Sheila, I asked my daughter's GP to refer her to a thyroid

specialist and she is due to see an endocrinologist in Feb. It is all

up in the air at the moment as I don't know if we will get any joy

from this course of action.

Jo

[Guest guest]

>

> As I stated before Jo, I believe Dr Myhill treats with minerals,

vitamins

> and pacing - but she never uses T3, which many doctors have found

works for

> people suffering with these conditions.

>

>

>

> Luv - Sheila

>

>

Hi Sheila and Jo

Dr Myhill was quite happy to prescribe Prednisolone or h/c for me and

she was also quite happy for me to be on Armour but I have never

asked her about T3 only because that doesn't suit me. She was

resistant at first to give me Fludrocortisone because she knew I

needed to be closely monitored on it but she did give me a script for

it when it was obvious I needed it and she wrote to my GP and asked

him to do this monitoring.

Her approach is an integrative approach where she tries to use the

best of traditional medicine with the best of complimentary

therapies. I have always found her to be very open minded and she

has learned from some of the stuff that I have learned myself. I

found it very helpful to receive scripts for meds so that I could get

them from a local pharmacy or sometimes she supplied them direct.

For example she used to charge me about £1.50 for a month's worth of

h/c or Prednisolone, she only charged cost price to her and it was

the same with supplements. There aren't many doctors who do that!

BW

Pam

[Guest guest]

>

> Here is a seminar to watch, gave me something to do.

> He seems to know what he is talking about, however, I worry about his

> giving people on SSRis 5Http in high doses. Seratonin syndrome etc? We

> may not have much seratonin but we do have it holding up there in our

> brains longer.

> Other things he says make a lot of sense. on ME\FM

>

> For anyone who didn't see the post from another lady on the STTM

> site, here is the link (apologies to lady I forgot ur name but that is

> the nature of the disease, I am sure you understand :-) )

> http://www.treatingandbeating.com/

>

> lotsa luv

> Dawn

>

> PS Thanks Bob, I will try and get a consultation with these people or

> at least speak to them :)x

>

Thank you so much for this post - I keep falling asleep for at least

one day a week and at least once a week to a fortnight I get massive

muscle and joint pain over my whole body, plus lots of random cold and

infection symptoms, which all tests turn out negative for.

What's your worry about 5HTP and what is the seratonin syndrome? I

haven't heard this phrase before.

V. interesting, thank you

x

[Guest guest]

Yes Jo I agree with you that it is very important that your daughter

gets her ferritin up.

Apart from anything else, if she does prove to need thyroid hormone

it will not work well for her if her ferritin is too low.

The glandular fever will have whacked her adrenals and, as you say,

she was under stress before that which will have weakened the

adrenals and then the glandular fever will have tipped the balance.

The NHS will be unlikely to do the testing she needs, certainly as

far as the adrenals are concerned.

What you want is an Adrenal Stress Profile from Genova Diagnostics

which costs £70. This will show the precise state of her adrenals at

four points in the day i.e. 8 am, noon, 4 pm and midnight. The test

the NHS does only gives a snapshot at one point in the day and this

is no good because cortisol has a daily rhythm, being highest at 8 am

and gradually sloping downwards throughout the course of the day and

night as melatonin rises to enable sleep. Then when melatonin lowers

in the morning, cortisol rises and so it goes on...

So having this snapshot picture does not give enough information. A

person's cortisol level might be fine at 8 am but not at the other

times. This test is worth its weight in gold Jo and I would not

hesitate in getting it done asap.

You need a full thyroid panel as well and you may be able to get this

from the NHS. If not, you can ask the GP if you can have the blood

drawn by the practice and then send it off to the same lab. Usually

the NHS will do the TSH and the FT4 but you also want the FT3 and

antibodies. The FT3 cost me £18 a little while ago at a private lab

so it is doable if you cannot get the full panel from the hospital or

GP.

Oops I just noticed you said that you had thyroid results already. So

if you post those with the ranges, we can help you understand them a

bit better.

Dr Peatfield will sort her out, of that I am sure and he will want to

see an adrenal saliva test result and a thyroid panel so it makes

sense to them them now if you can.

Mo

>

> I made a number of phone calls and appointments for my daughter

over

> the past 3 years relating to fatigue, stress and anxiety, dificulty

> coping with college and uni etc ever since she had glandular fever.

> She also had some stress and anxiety issues the year before

> glandular fever as there have been a lot of major life events that

> affected her and she may also have been having other physical

things

> going on, who knows, especially as she has a history of vitiligo

> (the GP was unaware of this so can't have checked her records very

> carefully)

>

> I then asked for a referal to an ME specialist (after surfing the

> net trying to make sense of things) which prompted a few more tests

> prior to going to rule out other things including thyroid function,

> but I must find out what was actually tested. I have the records

but

> they mean nothing to me and were apparently well within normal

> range.

>

> I too got the impression from the ME specialist that

> there was little funding or treatment of any kind available.

>

> After discovering this site and getting advice and info from

Sheila,

> I asked for referal to a thyroid/adrenal specialist because of the

> vitiligo history and all the symptoms she has. I have also made an

> appointment for her to see Dr Peatfield. I am not sure what tests

> the NHS will offer and we may have to get some done privately,

> although I don't know how this works if you need blood tests doing.

> It all sounds very expensive (on a low income) but health is

> paramount. Any advice about this would be good.

> Jo

>

>

> >

> > The consultant I saw poo-poo'd supplements so you are doing

> > marginally better with your guy by the sounds of it.

> Has your daughter had any testing done Jo?

> > You may have to jump through a few more hoops to get the right

> > treatment but you are well-placed now to get this, one way or the

> > other. Don't let the NHS decide what is right for your daughter is

> > what I would say. If they can meet your needs, fine and well. If

> they

> > cannot, then there are other options.

> > Your daughter will get what she needs one way or the other and

that

> > is the main thing.

> >

> > Mo

> >

>