Re: CFIDS doc/Barry Elson

[Guest guest]

I have two friends who have seen Barry Elson. They both feel that he has

helped them in some areas, but have both also spoken of his arrogance and his

lumping together of the various syndromes - FMS, MCS, and CFIDS. He seems to

know more about MCS than CFIDS, doesn't really know a lot about the

symptomatology of CFIDS (but nonetheless, to be fair, has had intuitions that

did help these two friends). I noticed that he posted his own name on the

Co-Cure list, and that he seems to use the very annoying and inappropriate

term " chronic fatigue. " One friend left his practice; another is still

seeing him. However, I've heard bad things about other doctors in Western

Mass, so he may be the best alternative there.

Peggy

In a message dated 12/30/01 9:34:07 PM,

writes:

<<

hi the cfids association has a catolog are people just

treating themselves with certain supplements or is it

best to work with a doc not sure if i asked this

already but have you heard of barry elson in MA? >>

[Guest guest]

How bad where they and how much better are they from

him? I hear he practices somewhat like majid ali in

new jersey? how come some people get better from this

and some dont? Like they said there was outbreaks in

that village so how could i have it and not anyone

else around me? what are most people doing these days

trying stuff themselves or workbng with docs? is

there any docs that have really truly helped people?

-sorry for all the questions

-- Peggomatic@... wrote:

> I have two friends who have seen Barry Elson. They

> both feel that he has

> helped them in some areas, but have both also spoken

> of his arrogance and his

> lumping together of the various syndromes - FMS,

> MCS, and CFIDS. He seems to

> know more about MCS than CFIDS, doesn't really know

> a lot about the

> symptomatology of CFIDS (but nonetheless, to be

> fair, has had intuitions that

> did help these two friends). I noticed that he

> posted his own name on the

> Co-Cure list, and that he seems to use the very

> annoying and inappropriate

> term " chronic fatigue. " One friend left his

> practice; another is still

> seeing him. However, I've heard bad things about

> other doctors in Western

> Mass, so he may be the best alternative there.

>

> Peggy

>

> In a message dated 12/30/01 9:34:07 PM,

>

> writes:

>

> <<

> hi the cfids association has a catolog are people

> just

> treating themselves with certain supplements or is

> it

> best to work with a doc not sure if i asked this

> already but have you heard of barry elson in MA? >>

>

>

>

[Guest guest]

Hi ,

I'll answer a few of your questions. CFS/CFIDS/FMS/ME are

considered " syndromes " , which means there is no one causative

underlying problem. Folks are simply categorized with these syndrome

titles because they fit the syndrome profile (symptoms). Typical

treatment is unsatisfactory by non educated docs, which is

unfortunately most. Each person on this board with CFS/CFIDS/FMS/ME

may or may not have the same underlying conditions that led to

their " syndrome " . Whether it be constant viral activation, or

mycoplasma, or adrenal exhaustion, or mercury issues, or stealth

viruses, or whatever, each PWC has to be taken individually. And all

factors have to be taken into consideration. It takes a very

knowledgeable and committed physician to wade through all of

symptoms, tests, and possible treatments, and most of all patience on

both the physician and the patients part.

Yes, there are docs that have truly helped folks. But patient

involvement and education is also very important. You can't just

rely on your doc to come up with the magic potion to cure your

syndrome. It takes concerted effort. And a dedicated doctor. And

probably a good bit of out of pocket money unfortunately.

Yes, it is very frustrating. My wife has been there. She is much

improved and we hope for further progress. It has taken over 2

years. It was very difficult, especially in the beginning of

treatment. Progress was slow but it did happen. You will have to

decide for yourself as far as what kind of doc will be best suited

for your set of symptoms. We chose a naturopath and DC that has had

lots of experience dealing with these syndromes from an adrenal

perspective. I changed careers to work with him because of the

frustration and struggle we went through to find a satisfactory

treatment approach. But his treatment is not necessarily what is

going to help you. You have to decide for yourself. Dr. Ali is

good. But there is no guarantee with any of them. Nothing ventured

nothing gained.

Blessings, Mark and

> > I have two friends who have seen Barry Elson. They

> > both feel that he has

> > helped them in some areas, but have both also spoken

> > of his arrogance and his

> > lumping together of the various syndromes - FMS,

> > MCS, and CFIDS. He seems to

> > know more about MCS than CFIDS, doesn't really know

> > a lot about the

> > symptomatology of CFIDS (but nonetheless, to be

> > fair, has had intuitions that

> > did help these two friends). I noticed that he

> > posted his own name on the

> > Co-Cure list, and that he seems to use the very

> > annoying and inappropriate

> > term " chronic fatigue. " One friend left his

> > practice; another is still

> > seeing him. However, I've heard bad things about

> > other doctors in Western

> > Mass, so he may be the best alternative there.

> >

> > Peggy

> >

> > In a message dated 12/30/01 9:34:07 PM,

> > @y...

> > writes:

> >

> > <<

> > hi the cfids association has a catolog are people

> > just

> > treating themselves with certain supplements or is

> > it

> > best to work with a doc not sure if i asked this

> > already but have you heard of barry elson in MA? >>

> >

> >

> >