[CO-CURE] MED,RES: Analysis Of Chronic Fatigue Syndrome Guidelines

[Guest guest]

This was posted awhile ago from Co-Cure. I was just checking out

the urls, and wanted to mention that people might find the pdf file for

Comparative Summary of International Guideline Recommendations PDF Format

(321 k) http://www.nzgg.org.nz/guidelines/0084/040518_matrix.pdf

of particular interest - I know I have. It even has a list of the

tests (as well as the symtoms ) required in the 4 different countries which it

is

evaluating. However it does not have many tests which Dr B Hyde used to

diagnose me with M.E -- but then he and others consider ME and CFS to be two

different kettles of fish. However he also uses so many tests to find out if one

has ME or CFS, or both, in his opinion. I would like to point out to those

whom are new to these illnesses, that this info is not up-to-date. There are

more

tests which some doctors & reseachers are considering important; as well as

vitamin/mineral deficienies which are showing as being extremely frequent &

important in treatment in ME/CFS such as magnesium deficiences, vitamin D

deficiency, selenium deficiency etc.

If anyone is interested in a website which clarifies this

difference

between ME and CFS, the following one is one of the best I have found to date.

A Hummingbirds Guide to Myalgic Encephalomyelitis:

www.ahummingbirdsguide.com

Blessings

Shan

[i know this isn't new, but I don't remember it being widely mentioned on

the lists and might be of interest to some. Tom K.]

http://www.nzgg.org.nz/guidelines/dsp_guideline_popup.cfm? & guidelineID=84

Analysis of Chronic Fatigue Syndrome Guidelines

MSWORD Format (924 k)

http://tinyurl.com/7qqjf

i.e.

http://www.nzgg.org.nz/guidelines/0084/Analysis_of_Chronic_Fatigue_Syndrome_Guid\

elines.doc

Comparative Summary of International Guideline Recommendations PDF Format

(321 k) http://www.nzgg.org.nz/guidelines/0084/040518_matrix.pdf

ANALYSIS OF CHRONIC FATIGUE SYNDROME GUIDELINES

PURPOSE

The Ministry of Health contracted the New Zealand Guidelines Group (NZGG) to

undertake an analysis of international guidelines for the care and treatment

of people with Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis

(ME).

The guidelines reviewed were:

..    Royal Australasian College of Physicians in Australia - Chronic

Fatigue syndrome: Clinical practice guidelines  produced in 2002;

..    Report to the Chief Medical Officer CFS/ME Working Group, produced

in the UK in  2002;

..    US guidelines produced by the  Academy of Medicine, University of

Medicine and Dentistry, and Department of Health and Senior Services, in New

Jersey, A Consensus Manual for the Primary Care and Management of Chronic

Fatigue Syndrome, produced by the in 2002; and

..    Health Canada Expert Medical Consensus Panel (ME /CFS) report

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case

Definition, Diagnostic and Treatment Protocols, published in 2003.

This report assesses the suitability of the existing overseas guidelines for

adoption or adaptation for use in New Zealand.

SUMMARY

The main findings of this report are:

..    All four guidelines have the potential for adaptation for the NZ

setting, but no single guideline could be immediately used in NZ as it

stands;

..    The reviewers recommend that the strengths of all four guidelines

are drawn on to develop a guideline for New Zealand;

..    To adapt the guidelines the following activities would need to be

undertaken:

-    additional literature reviews of the latest international and NZ

evidence would be required,

-    evidence relating to population groups including Maori, children and

older people would need to be reviewed,

-    the evidence would need to be reviewed by a multi-disciplinary team.

..    Reformatting and the use of diagrams and algorithms would be

required for a NZ audience.

..    A consultation process would be essential to ensure buy-in to the

finished guideline.

Various options for further action are presented with approximate costs.

These include:

..    development of a full guideline including full literature searching,

..    development of an adapted guideline, and

..    production of a comparative summary of the four reviewed guidelines.

Advantages and disadvantages of each alternative are outlined.

----------------------------------

There seems to be a facility to make comments on this at:

http://tinyurl.com/b47cr

i.e.

http://www.nzgg.org.nz/guidelines/dsp_guideline_popup.cfm?guidelineID=84 &

guideline_popup_mode=comments

             

[Guest guest]

>

I would like to point out to those

> whom are new to these illnesses, that this info is not up-to-date.

There are more

> tests which some doctors & reseachers are considering important;

as well as

> vitamin/mineral deficienies which are showing as being extremely

frequent &

> important in treatment in ME/CFS such as magnesium deficiences,

vitamin D

> deficiency, selenium deficiency etc.

A note of caution about interpreting results of tests for vitamin

deficiencies. This is something my partner and I found out recently.

In order to understand if you have a vitamin deficiency, you need to

test for both the ingested form AND the active form. For Vit D -

thats the 25-D (ingested) and 1,25 (active metabolite). In Th1

autoimmune illnesses, 25-D is over-converted to 1,25-D and in this

case, the patient may get symptoms of Vit=D poisoning. (I was told

by a Dr that the body is only supposed to convert 5% of 25-D to 1,25

D).

So if you were only tested for 25-D (the ingested form) and it came

out very low - you might be encouraged to supplement with more Vit-

D. However if you are over-converting - you will make the problem

much worse - so check for both 25-D and 1,25-D before supplementing.

There is some more info about this in the following paper which I

found quite useful:

http://members.aol.com/SynergyHN/vitd

BW

Lara