RE: Heart failure in ME/CFS, mitochondria, D-Ribose

August 19, 2005

On Thu, 18 Aug 2005, Adrienne wrote:

> Honey, can you tell us more about the diet? I finally got off sugar a few

months ago and really feel some good improvement. Would like more hints or

clues.

> Adrienne

Hi Adrienne,

I mailed in reply to yesterday, asking about diet etc -

maybe that mail covers it? If you're logged into it appears

at:

/message/81699

- if not please let me know and I'll repost.

Honey

August 19, 2005

Thanks Phil for your e-mail,

One needs to be continually reminded of the sad state of affairs in

the UK. What a difficult situation. Certainly in California but I

would think in any major city in the US one could readily find a

holistic health oriented MD who was fully aware of and sympathetic

to the problems of CFS patients. I had no trouble doing so 20 years

ago in Los Angeles.

I think you really made a difference with Dr. Myhill as she used

quite a bit of information from the Sieverling paper. It does seem

amazing at first that she didnt know of Cheney but then again Cheney

is best known by patient groups - particularly this one - probably

because this group had for a long time a contributor and patient who

was a real promoter of his work. This group is probably the best

informed Cheney group in the world!

The world of CFS research, however, those who do their work based on

academic papers and statistically defined studies have very little

reason to know Dr. Cheney at all. While he has been a co-author

(say one of six) of several papers in the past, he has never, to my

knowledge, been the lead author of a study or a theoretical paper.

Thus while his contribution to the patient community and to patient

treatment has obviously been quite large his contribution to the

research agenda of CFS has been quite small. I'll bet she just never

happened to bump into someone - until a couple of weeks ago - who

mentioned him. I visited a CFS doctor in San Francisco who knew

alot about Dr. Berg and hypercoagulation and alot about Dr. Rea and

MCS but almost nothing about Cheney!

Theres got to be something I'm missing about hypothyroidism - its

pretty easy to test for, the tests are commonly done yet here we

have two doctors, Cheney and Myhill, who presumably do these

tests,who say hypothyroidism is basically common in CFS. I just dont

understand it. Why would they put their foot in their mouth like

that? If they're not putting their foot in their mouth why havent

there been reccomendations for thyroid treatment for CFS for the

past twenty years?? I just dont understand it. That person you

mention HAD hypothyroidism not CFS. Hypothyroidism readily causes

fatigue etc. It should be one of the first things anyone

complaining for excessive fatigue is tested for.

Anyway, I wish you the best with Dr. Myhill. I'm certainly not a

doctor. I'm sure she could explain many of my concerns and I

applaud her for being a beacon of light in what is otherwise a very

dark place. Please let us know how it turns out. Good luck!

In , " swiss_phill " <fi11ip@h...>

wrote:

> Hi,

>

> Having seen Dr Myhill two weeks ago, I mentioned Cheney to her, as

I

> had read some of his work. She simply hadn't heard of him. This

did

> surprise me, but the person whose work she was most excited about

> was Sinatra (as mentioned in her article) rather than Peckerman. I

> think she is still figuring out exactly how heart failure might

fit

> into the CFS jigsaw. She can only speculate at the moment what

> causes the mitochondrial failure in the first place (infection

being

> a prime candidate). As I see it it is the mitochondrial failure

that

> is of prime importance, and the cause of, rather than the result

of

> things like sweating problems.

>

> It is also worth pointing out that here in the UK thyroid problems

> are poorly understood (because medicine here is not well

practised,

> so what isn't in black and white is simply dismissed - pity the

poor

> dim-witted GP...) and rarely diagnosed. Few of the CFS people I

know

> here have been tested for it, although it is worth noting that one

> of the people I know who was initially diagnosed with CFS and

> recovered, did so when Dr Myhill found she had a thyroid problem.

>

> I do wish I had a scientific background so that I could better

> understand the issues involved. I think it is right to question

> things from any source, just don't forget that Dr Myhill is one of

> very few doctors in the UK who have any understanding of what

CFS/ME

> is. I don't know how things are in other countries, but we're

still

> fighting the prejudice that CFS/ME is " all in the mind " , so ANY

work

> on the physical side is worth its weight in gold.

>

> Phil

>

> > >> I believe so Helen - a quick Google implies it's a naturally

> > >> occurring five-carbon sugar, so you can buy over the

counter.

> And

> > >> that it has no contraindications known. Plus, it apparently

> tastes

> > >> nice too..!

> > >

> > > Yup, it tastes nice!

> >

> > Oh, wait, you've taken it? I haven't found anyone who has

> > specifically for ME/CFS or FM yet. Did it help, or did you just

> get

> > started on it via Dr Myhill?

> >

> > > I'm not sure how it combines with an anti-candida diet

though...

> >

> > Hmm, worrying. I'm on a massively no-sugar diet to not feed my

> > supposedly dying parasite, Blastocystis Hominis, and worry a bit

> > about D-Ribose being technically a sugar and feeding it. I

forgot

> to

> > ask her about this. Anyone have a clue?

> >

> > Honey

> >

> > This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are

interested

> in any treatment discussed here, please consult your doctor.

> >

August 19, 2005

Hi Cort,

Thanks for your supportive email. I'll certainly keep this group

posted regarding my progress over the coming weeks / months. In the

meantime, regarding Dr M and thyroid problems, it is worth noting

that she includes a thyroid test in her standard screening tests.

Perhaps my wording wasn't very clear before (I am struggling at the

moment!) but she did diagnose Hypothyroidism in my friend, after

other doctors had diagnosed CFS, so it is a problem she is aware of.

Phil

> > > >> I believe so Helen - a quick Google implies it's a naturally

> > > >> occurring five-carbon sugar, so you can buy over the

> counter.

> > And

> > > >> that it has no contraindications known. Plus, it

apparently

> > tastes

> > > >> nice too..!

> > > >

> > > > Yup, it tastes nice!

> > >

> > > Oh, wait, you've taken it? I haven't found anyone who has

> > > specifically for ME/CFS or FM yet. Did it help, or did you

just

> > get

> > > started on it via Dr Myhill?

> > >

> > > > I'm not sure how it combines with an anti-candida diet

> though...

> > >

> > > Hmm, worrying. I'm on a massively no-sugar diet to not feed my

> > > supposedly dying parasite, Blastocystis Hominis, and worry a

bit

> > > about D-Ribose being technically a sugar and feeding it. I

> forgot

> > to

> > > ask her about this. Anyone have a clue?

> > >

> > > Honey

> > >

> > > This list is intended for patients to share personal

experiences

> > with each other, not to give medical advice. If you are

> interested

> > in any treatment discussed here, please consult your doctor.

> > >

August 19, 2005

For one thing, the " normal range " on thyroid testing has recently changed and a

lot of people who were considered normal in the past are now considered

abnormal. Some progressive doctors have always known this, but most have only

treated when people are outside the normal range.

Also, thyroid problems often develop in people when they have other illnesses.

But because the definition of CFS says you can't have any other problems such as

thyroid, if they say you have a thyroid problem then by definition you can't

have CFS. I think this is a problem. I had CFS for several years and my

thyroid was normal (even for the new guidelines). But then at some point my TSH

went high. That was when I got post-exertional fatigue. Before then I had

fatigue but it was due mainly to low blood pressure and general flu-like feeling

like crap, not the classic post-exertional fatigue. Once I was treated for the

thyroid that symptom almost immediately disappeared. So I believe it needs to

become accepted that people with CFS can have thyroid problems that contribute

to their CFS symtpoms, but it doesn't mean they don't have CFS, because just

treating the thyroid doesn't solve all the other problems they have.

I do encourage anyone with CFS and post exertional fatigue to have a thyroid

test done if you haven't in the last year.

Doris

----- Original Message -----

> Theres got to be something I'm missing about hypothyroidism - its

> pretty easy to test for, the tests are commonly done yet here we

> have two doctors, Cheney and Myhill, who presumably do these

> tests,who say hypothyroidism is basically common in CFS. I just

dont

> understand it. Why would they put their foot in their mouth like

> that? If they're not putting their foot in their mouth why havent

> there been reccomendations for thyroid treatment for CFS for the

> past twenty years?? I just dont understand it.

August 19, 2005

" Doris Brown " <dorisbrown9@y...> wrote:

But because the definition of CFS says you can't have any other

problems such as thyroid, if they say you have a thyroid problem then

by definition you can't have CFS.

I don't think that's exactly accurate. If you treat your thyroid and

get the hormone levels corrected, but continue to experience chronic

fatigue, then you can still " qualify " for CFS. And what an honor that

is!

penny

August 19, 2005

Thanks, I did see your post-after I made my request.

Adrienne

Re: Heart failure in ME/CFS, mitochondria,

D-Ribose

On Thu, 18 Aug 2005, Adrienne wrote:

> Honey, can you tell us more about the diet? I finally got off sugar a few

months ago and really feel some good improvement. Would like more hints or

clues.

> Adrienne

Hi Adrienne,

I mailed in reply to yesterday, asking about diet etc -

maybe that mail covers it? If you're logged into it appears

at:

/message/81699

- if not please let me know and I'll repost.

Honey

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

August 19, 2005

After reading a bit it seems its important to get the full ranges of thyroid

tests - which include T3, T4 TSH and TRH I believe. (Anything else?)

Doris Brown <dorisbrown9@...> wrote:For one thing, the " normal range " on

thyroid testing has recently changed and a lot of people who were considered

normal in the past are now considered abnormal. Some progressive doctors have

always known this, but most have only treated when people are outside the normal

range.