What is the treatment/protocols CFS?

[Guest guest]

Can someone tell me what is the treatment for CFS? The quack I was going to

said I had it.. But did nothing about it.

Which seems crazy to me.. If they say you have something why not treat it? I

don't understand at all.

So what is the protocols CFS?

Thanks for any and all info!!

[Guest guest]

Hi, Kay.

Welcome to the " crazy " world of CFS! Sorry that you had to become a

member of it, but since you had to, welcome!

There is no standard treatment for CFS in the conventional medical

world. Quite a few doctors don't even believe it exists, and many

of those who do believe it exists would prefer not to have CFS

patients, because they really don't have a good treatment and it's

very frustrating and time-consuming for them.

This list is composed largely of people who are trying various

treatments on themselves. We don't all agree on what should be

done, and the population of PWCs (people with CFS) is very

heterogeneous, so the same treatments don't seem to work for

everyone.

I am a CFS researcher, and have been studying this disorder for

about ten years. I don't have CFS myself. I have a hypothesis that

I think fits quite a few, but not all, cases. I hope to be able to

write it up in a more complete form this summer, but you can find

pieces of it, as it has developed, at the urls below.

If you would prefer to listen to it, you can find two recent

interviews I participated in on http://www.autismone.org/radio.

Click on the archives at the bottom, then click on the archives

again, then use the left arrow to go to the May calendar. Scroll

down to May 30 and click on the bolded times there. Then double

click on the upper play arrow and you should be able to hear the

first interview. The second one was in early June, and you can find

it the same way.

If you do an " advanced search " on posts written by rvankonynen in

the archives of this list, you will find more pieces of it. My

current suggested treatment approach is an adaptation of what is

being done in autism by the Defeat Autism Now! project and by Dr.

Amy Yasko.

Here are the urls:

1) SUGGESTED GENERAL OUTLINE FOR DEALING WITH CASES OF CFS

http://www.cfsresearch.org/cfs/research/treatment/13.htm

2) IS GLUTATHIONE DEPLETION AN IMPORTANT PART OF THE PATHOGENESIS OF

CFS?

http://www.cfsresearch.org/cfs/research/treatment/15.htm

3) CFS and Autism

http://www.cfsresearch.org/cfs/research/treatment/20.htm

4) Augmenting Glutathione in CFS

http://www.cfsresearch.org/cfs/research/treatment/21.htm

I hope this is helpful.

Rich Van Konynenburg

>

>

> Can someone tell me what is the treatment for CFS? The quack I

was going to

> said I had it.. But did nothing about it.

> Which seems crazy to me.. If they say you have something why not

treat it? I

> don't understand at all.

> So what is the protocols CFS?

>

> Thanks for any and all info!!

>

>

>

[Guest guest]

Kay> Can someone tell me what is the treatment for CFS? The quack I was

going to

said I had it.. But did nothing about it.

Which seems crazy to me.. If they say you have something why not treat

it? I

don't understand at all.

So what is the protocols CFS?

Hi Kay,

I love these questions. Right to the point. You have definitely come

to the right place. This list is on the leading edge, trying to make

sense of the research and putting it to practical use for those who want

to be involved in their own therapy. Unfortunately there is not a

consensus about the root cause of CFS, no single protocol for CFS, and

no simple drug treatment, so most MDs are not able to help. If you

press them they will treat some of your symptoms, but that can actually

allow the illness to progress as you may then over-extend your energy

resources because you feel better than you actually are.

There are many protocols that have not helped some people with CFS. I

think the greatest risk is that you will find one of those and that it

can be harmful to you, due to your own sub-type and/or bio-individuality

(your genetics, for example). This has happened many times, so I think

sharing information by participating in this list and others like this

can be very helpful in your quest to get well.

An additional complication is that there appear to be sub-types of CFS.

Even the CDC is aware of this (see their press release on April 20, 2006

- transcript # t060420), and there is not yet a clear understanding of

those sub-types, so it is important to realize that you may have to try

several different treatment protocols before you find the one that

matches your sub-type. For example, some people have a primary problem

with Lyme disease. Some react to molds, some react to EMF, some have

MCS, some have an immune system problem, some have hypercoaguability,

and many have combinations of these and other conditions.

But what Rich mentioned in his reply, and what I believe is emerging on

this list is an understanding that the majority of CFS sufferers do have

a fundamental insufficiency of Glutathione, along with a few other

substances involved with its production and use in the body. There are

many possible contributing factors to this glutathione Insufficiency.

Therefore, treatment protocols should involve identifying and addressing

as many of those factors as is possible for you. Here are some ideas I

am working through about treatment goals for my own CFS, with a focus on

the glutathione insufficiency explanation. Maybe some of this can be

helpful.

1. Identifying and supporting any genetically weak parts of the

detoxification system, particularly the glutathione pathway, methylation

and phase II liver sulfur cycle. This includes the Yasko genetic

profile by Genovations, and a liver function profile test.

2. Re-building, recycling and even replacing glutathione. Some

options are to use whey protein and a few supplements to re-build,

salt/c to recycle, and liposomal form (encapsulated in

phosphatidylcholine) orally to replace.

3. Assisting the body with detoxification of substances that have

built-up because of low glutathione. This includes heavy metal

chelation and mild herbal detox programs.

4. Identifying and treating toxin-producing infections that deplete

glutathione such as Lyme, HHV6, mycoplasma, parasites, candida/fungal,

protozoas, etc.

5. Along with re-building glutathione, supporting any organ systems

and biological processes that do not respond and may be damaged due to

the prolonged low Glutathione levels. This may include adrenal,

vascular (including coagulation), immune (T1/T2 imbalance), pancreatic

(enzymes), liver (detox and gastric secretions), glandular (thyroid,

pituitary, others), neurological (ion channel and nerve health),

muscular systems, lymphatic drainage, and connective tissue troubles.

6. Providing healing nutrients, and using high-quality

nutraceuticals, vitamins and minerals to help promote healing and

re-generation of the body's depleted systems. This may include

magnesium, B vitamins (especially methyl B12), glyconutrients, juicing,

EFAs, amino acid therapies, and a wide variety of healing foods,

extracts and oils, balanced minerals.

7. Avoiding external glutathione stressors such as environmental

toxins (including avoiding toxic mold, which is a huge topic of its

own), adrenal and emotional stress (the fight/flight response also

depletes glutathione). Also avoidance of EMF (microwaves, cell phone

towers, etc.), and toxic chemicals (VOCs). And an all natural, organic

diet is a good idea, to avoid artificial flavorings, preservatives, and

pesticides that place stress on the detox system and thus further

deplete glutathione.

--Kurt