Saturday, March 1, 2008

Quote of the Week

Sleep, Sweet Elusive Sleep

One of the symptoms of CFS is nightmares. Meaning that when you’ve finally quieted down the digestive rumbling, the agonizing pain, and everything else that’s keeping you awake, you just about fall asleep and you wake up screaming.

We had noted the correlation long before I read about it, that I seemed to have nightmares right about the time that I started a CFS relapse.

The question is, and remains, chicken or the egg ... was I having the nightmares because my brain chemistry was changing to relapse mode, or was I relapsing because of too many nights waking up at 3 AM and either not being able to get back to sleep, or getting back to sleep only to have the same nightmare again? We all know that not enough sleep will make you sick, even if you don’t have CFS.

Of course, those ever-helpful people think they can psychoanalyze me out of this. "The dreams have something to do with what’s happening in real life." Yuh-huh. I get chased by dragons every day in my waking life. Suuuuuure. I have this same nightmare whether I’m employed or not, relaxed or stressed, financially secure or down to my last couple bucks; the only thing in common is that shortly after the first dragon nightmare, I go into relapse. That fire-breathing dragon has absolutely nothing to do with what’s going on during the day, because it only comes out when I’m in relapse (or as a harbinger that I’m heading for relapse). I don’t read novels that have dragons in them, I don’t watch movies that have dragons in them. Never did. So I’m not sure where he comes from. But there he is.

He’d been gone for a while, which I took as a sign that I was finally going into remission, but he came back the other night. There was nothing different about the day he came back, just another run of the mill day of sleeping, eating, reading the newspaper, watching TV, and doing a little stitching ... nothing that should have triggered a bad dream (well, except for the bad dream quality of the life I’ve been leading the past 8 years since this relapse started). But, there he was again, and when I tried to go back to sleep, he came back again. So I got up and did something to take my mind off it, and when I tried to go back to sleep an hour later, he came back again. And has been dogging me ever since.

Excerpt from A Day in the Life

Severe Myalgic Encephalomyelitis is basically a living hell.

I am not the most severely affected by M.E. either. Far from it. One of my close friends has 5 times had to be resuscitated because she stopped breathing completely due to severe M.E., other friends are completely housebound and bedbound and need help with toileting and all personal care (they are unable to even brush their own teeth or feed themselves and often cannot speak or read or write or do almost anything except just lie there in a dark quiet room in agony) and others have died from the illness. M.E. is a neurological illness of extraordinarily incapacitating dimensions.

I’m also fortunate to have the support of most of my family; many people aren’t so lucky due to the many myths and baseless propaganda that has been circulated about the illness (and accepted as truth by many people unfortunately). I really have no idea how I’d cope without my parents, my sister, or the handful of amazing pre-illness friends I have that have stuck around or the great new (and also ill) ones I’ve met through my computer. Plus the brilliant doctor I’ve finally found. I am very, very lucky in some ways.

This paper has taken me 8 months to write, on and off, bit by tiny bit. People need to know that those of us with M.E. desperately need so much more help, support, understanding and money for real research than we are currently receiving.

I’d also like to add a quick but heartfelt THANK YOU to the wonderful people out there who helped me (and my illness damaged brain) so very much with the editing of this paper. They know who they are.

http://www.ahummingbirdsguide.com/adayinthelife.htm

* * *

Like Jodi, almost all of my pre-illness friends drifted away.  They're willing to socialize if I can go along with them to their kid's soccer game, or jet-skiing, or hiking, but are "too busy" to socialize if it means just sitting in my living room doing nothing; they're too caught up in the busy-busy-busy lifestyle to waste time chatting in a situation where they can't multi-task.  But the effort of getting to the soccer game at the far end of the county by bus (I'm not allowed to drive due to the fainting spells) would exhaust me too much to enjoy the game, and physical activity like jet-skiing or hiking ... HA! 

Like Jodi, thanks to the internet, I have made new friends to replace them.  Of course, having good friends in Israel and England and South Africa is not the same as having friends nearby who can be dispatched to run errands, but at least it's someone to talk to.  And, like Jodi, I have a whole support group full of wonderful friends, who are also ill.  None of these new friends can be of help with the things I really need, like cleaning the house, but they keep me from feeling isolated when I'm stuck in bed, and perk me up when someone who resents my activism starts making ad hominem attacks.  I know where I can always go for a round of applause for using a portion of my limited energy to educate and raise awareness that CFS is real, and it's neurological, not psychiatric or hypochondriacal in origin.

I don't have siblings/children/spouse to help me, and my parents are elderly, 3000 miles away and with their own serious health problems, so even if I moved closer, they can't take care of me, either.  You muddle through the best you can.  If that means stashing a case of Ensure and a couple boxes of Pop-Tarts under the bed for the days you can't make it to the kitchen to cook a decent meal, well, at least you're eating.  There's protein/vitamins/minerals in them, and that's what it takes to get well.  (Yes, there ARE healthy things in PopTarts.  Go read the label.  They're healthier than you'd think.)

Hummingbird's Guide Feb 2008

Hello and welcome to the 'A Hummingbirds Guide to Myalgic Encephalomyelitis'
e-newsletter for February 2008

I hope this newsletter finds you and yours doing as well as possible.

I have a handful of new updates to tell you about this month.

-----

The 'Treating Myalgic Encephalomyelitis - The Basics' paper was updated.

Many new links were added and the treatment examples section was fully
updated and now provides more detailed information on this topic.

New treatments mentioned include: Alpha Lipoic Acid, N-Acetyl Cysteine, sublingual ATP, sublingual vitamin B12, antioxidants, digestive enzymes, Malic acid, D-ribose, medical quality (carefully fitted) compression stockings, Betaine, Turmeric (Curcumin), DMAE and low dose daily aspirin.

Before trying any of these treatments however (or any treatments) please do
read the various cautions given in this paper FIRST.

See: http://www.ahummingbirdsguide.com/treatingmethebasics.htm

(A big thank you to those M.E. patients who offered suggestions and
constructive criticism for the updating of this paper, it was much
apprciated as always!)


-----

Minor updates

Minor updates were made to the following papers (and their summaries, where
applicable):

1. The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List
http://www.ahummingbirdsguide.com/themesymptomlist.htm

2. What it feels like to have Myalgic Encephalomyelitis: A personal M.E.
symptom list and description of M.E.
http://www.ahummingbirdsguide.com/whatmefeelslike.htm

3. Myalgic Encephalomyelitis is not fatigue, or 'CFS'
http://www.ahummingbirdsguide.com/fatigueschmatigue.htm

4. Practical tips for living with Myalgic Encephalomyelitis, and
http://www.ahummingbirdsguide.com/helpyhints.htm

5. A day in the life of severe Myalgic Encephalomyelitis
http://www.ahummingbirdsguide.com/adayinthelife.htm


-----

Reminder: Would you like to see your M.E. story on a M.E. YouTube video?

For more information see:
http://www.ahummingbirdsguide.com/newmevideo.htm


------

That's it for this month!

Next month I very much hope to be well enough to write again publically
about the sham so-called 'Fair Name' campaign (and the ill-advised use of
the unhelpful and unscientific term 'ME/CFS' generally by advocates). This
campaign makes a mockery of legitimate advocacy, and we must join together
to oppose it; M.E. sufferers *and* patients who do not have M.E. but have
been misdiagnosed with 'CFS' alike. It serves neither of our best interests
and indeed will only increase confusion and make the problems much worse.

We must not let another 20 years be wasted! Too many of us have had our lives needlessly destoyed by mistreatment, abuse and neglect already, and there have been more than enough needless deaths...

For more information on this topic see:
http://www.ahummingbirdsguide.com/cfsmustbeabandoned.htm  and
http://www.ahummingbirdsguide.com/whatisme.htm


All the best, as always, in your ongoing battle with M.E. or your loved
one's battle with M.E., until next month,

(Also please note that, unfortunately I am not able to reply to all of the
emails and Guestbook entries I have received and also that some replies will
be very delayed. I am more than 6 months behind with my email. My
apologies. A big thank you to everyone who has written though, especially if
it was with suggestions for the site or positive comments.)

Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com

Do not for one minute believe that CFS is simply another name for Myalgic
Encephalomyelitis (M.E.). It is not. The CDC 1988 definition of CFS
describes a non-existing chimera based upon inexperienced individuals who
lack any historical knowledge of this disease process. Any disease process
that has major criteria, of excluding all other disease processes, is
simply not a disease at all; it doesn't exist. M.E. and CFS should be
separated as definitions. They are not the same. Dr Byron Hyde MD 2006
-- 
If you would like to subscribe to the newsletter yourself, see:
www.ahummingbirdsguide.com/websiteenewsletter.htm  for details.

To read past newsletters/site updates see the 'What's New' section on the
website at: http://www.ahummingbirdsguide.com/whatsnew.htm

* * *

As usual when passing along something Jodi's written, I must footnote that in the US, by CDC fiat, there is no such thing as ME.  Unless you have a particularly activist doctor, the only diagnosis you're going to get is CFS.  So take her claims that "CFS is not ME" with a grain of salt, because in the US, CFS *is* ME.  Whether your original diagnosis was ME or Post Viral Syndrome or something else, we all had our diagnoses changed in 1988 -- as my specialist told me, "if I don't call it CFS, insurance won't pay for your treatment", because the new insurance forms had removed ME and Post Viral Syndrome as separate codes.

Would I prefer to have it called Myalgic Encephalomyelitis?  You betcha ... it would get rid of all the whackjobs who tell me that CFS=depression, CFS=laziness, CFS=hypochondria, because Myalgic Encephalomyelitis actually sounds like a real disease.  But, if you're in the US, you resign yourself to the name that CDC mandated because you don't have a choice.

 

Thursday, February 28, 2008

Update on lighting and ADA

Here's the official government response:

Dear Ms. Baird:

Currently, the ADA Standards issued by the U.S. Department of Justice and
based on the Access Board's accessibility guidelines do not contain provisions
for lighting.  However, you pose an interesting problem that we should
consider the next time we revise our guidelines.
  If you have not commented to
the Department of Energy regarding the impact of their requirements on
individuals with photosensitive epilepsy and other related disabilities,
please consider contacting the Department.  I am including a contact below to
assist you:

Ms. Melverlynn Hull
Disability Program Manager
Office of Civil Rights and Diversity (ED-4)
Department of Energy
Room 5b-168
1000 Independence Avenue, S.W.
Washington, DC 20585
(202) 586-2248
melverlynn.hull@hq.doe.gov

Regards,
Marsha Mazz
Marsha K. Mazz
Technical Assistance Coordinator
U.S. Access Board
1331 F Street, NW
Suite 1000
Washington, DC 20004
(202) 272-0020 (Voice)
(202) 272-0082 (TTY)
mazz@access-board.gov
www.access-board.gov

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

From: uncmom59@aol.com [mailto:uncmom59@aol.com]
Sent: Friday, February 22, 2008 5:38 PM
To: ta
Subject: Facilities Barrier

Hello,

I am sending Congressman Coble's office information on lighting as a barrier
for persons with photosensitive disabiilites.  This is in regards to the
Energy Act provision phasing out incandescents by the year 2012.
I have photosensitive epilepsy triggered by the flicker in these lights.
There are other disabilities such as migraines, ADHD, lupus, vestibular
disorders, autism spectrum disorder, myalgic encephalomyelitis, CFS, and MCS
that may be worsened by florescents.  Can you give me the Access Board
regulations on accessibility regarding alternative lighting.  Natural and
incandescent seem to be the only two at present that are not problematic.
Halogen and LED glare is problematic.

Can you address the problem for me as an access barrier to federal, state,
local government facilities as well as private, ie. shopping,doctors, church,
home?

Thank you.

Margaret Holt Baird

Monday, February 25, 2008

One Click Lawsuit Update

25 February 2008

<?XML:NAMESPACE PREFIX = O /> One Click NICE Judicial Review

Campaign Update 4

http://tinyurl.com/377qcg

By Jane Bryant

 
Dear All

I write to you today on a subject very dear to the hearts of hundreds of thousands of people around the world - the One Click Judicial Review of the appalling CFS/ME Guidelines produced by the National Institute for Health and Clinical Excellence (NICE) in the <?XML:NAMESPACE PREFIX = ST1 />United Kingdom.

So often I have wanted to write to you on this subject. To explain the weaving, the ducking and diving, the secretive duplicity and the sheer political malfeasance carried out by some over this court case.  Each time I have stayed my hand.  Stayed my hand in the hope that the sheer grinding hard work going on behind the scenes of this case would improve our position.   

It is my happy duty to announce to you today that thanks to the formidable representation carried out by our excellent lawyers Saunders Solicitors LLP (http://tinyurl.com/ysllr5) and the work of One Click conjoined to help ME/CFS labelled patients, we have very good news to impart.

One Click NICE Judicial Review Background

One Click is taking on new global readers every day of the week and so I feel that it is beholden upon me to provide a short backgrounder for everyone in relation to this momentous High Court case.

For many years, the One Click health advocacy pressure group has been a Registered Stakeholder on the development of the CFS/ME NICE Guidelines (http://tinyurl.com/2zdww6) since their inception. 

One Click submitted our material to NICE contributed by patients, doctors, academics, health advocates, carers, families and friends from around the world.  No matter how many obstacles were put in our way by NICE, we overcame them to submit our formal evidence.   See The One Click Group Response - CFS/ME NICE Guidelineshttp://tinyurl.com/ygweub), submitted to NICE on 16 November 2006 and updated by us on 6 October 2007. (

Upon publication of these Guidelines in August 2007, it became abundantly clear that our formal representations to NICE by due process, along with many other Stakeholders besides, had made absolutely no difference. That the entire production and publication of these Guidelines had been unlawfully hijacked by the psychiatric lobby that has been permitted by government to control all research and treatment on ME/CFS in the United Kingdom.

In October 2007, One Click therefore formally and publicly announced our intention to take NICE to the High Court for Judicial Review of these Guidelines.  Our announcement was sent to the NICE Chairman Michael Rawlins, Chief Executive Andrew Dillon and various NICE personnel.  We subsequently approached the Legal Services Commission/Legal Aid (http://tinyurl.com/39wjw4) for their assistance in funding this momentous case.

The Legal Services Commission complied.  It provided us with initial funding to work with our formidable barrister, Kate Marcus from Doughty Street Chambers (http://tinyurl.com/2lkac6) and to lodge our Application with the High Court.  See 21 November 2007 Press Release (http://tinyurl.com/3ccfp4), Health Advocacy Pressure Group Launches NICE High Court Action Today.

Fundraising

In December 2007, the Legal Services Commission asked us to raise £10,250 as our financial contribution for this case against NICE to be brought in the name of your young Ben, The One Click Group Technical Director.  With great difficulty and with excruciating hard work, we raised the pain-soaked thousands of pounds demanded by them.

From around the world we collected your financial pledges to fight this case, sent direct to Saunders Solicitors LLP.   From a little boy donating his pocket money from the United States to an entire church congregation in the UK, the funds arrived from patients, their carers, families, friends, doctors, academics, researchers and selected charities from around the world.  £5 here, £10 there and a bit more from those who could afford it.  From Switzerland, Australia, the United States, Germany, France, New Zealand, South Africa, South America, Canada and the United Kingdom to name but a few, in came your contributions to challenge NICE in the High Court frequently accompanied by your words.  The words of pain, medical neglect, malfeasance and of the psychiatric lobby manipulation of this neurological illness - your heartbreaking stories flooded in to One Click and its lawyers. 

Your response to us was so great.   We immediately recognised that we are making legal history with this case. Never has anything like this been done anywhere else in the world before.

The very idea of the Legal Services Commission forcing us to raise so much money to challenge deeply flawed government policy made me feel utterly sick because it fundamentally and completely conflicts with access to justice and the very concept of political democracy.  Nonetheless we complied.  Saunders informed the Legal Services Commission that we had reached their £10,250 target and on 20 January One Click published Very Simply We Did It (http://tinyurl.com/2esegy) to announce this momentous news.

Breaking News

Nothing is ever simple and straightforward with a case like this.

To our considerable dismay – nay outrage - the Legal Services Commission response to our £10,250 contribution was to elect to deny us the funding that we required to place our expert witness testimony before the High Court.  Lest we forget dear friends, the Legal Services Commission is a government-funded quango with a Legal Aid budget of £2 billion.  See The Times, Public Let Down By Legal Services Commission (http://tinyurl.com/2nfdd5).  

At that juncture it seemed to us that above all, the British government wished to place obstacles in the way of the pro bono expert witness testimony of Dr Bruce Carruthers - one of the foremost leading experts in the world on ME/CFS and whose international medical consensus Guidelines make those of NICE look like fatal amateur night – surfacing in the High Court.

Dr Bruce Carruthers is the lead author and co-editor of the   Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols The ME/CFS Canadian Guidelines (http://tinyurl.com/br8oa).  Funded by government, the ME/CFS Canadian Guidelines incorporate most all scientific research done on ME/CFS for the last ten to fifteen years.

Produced by a process of international consensus by a panel of scientists and expert physicians who have between them diagnosed/treated over 25,000 patients around the world, the ME/CFS Canadian Guidelines are the most advanced, consensual, clinical diagnostic criteria on this illness available in the world today. As such, they have long symbolised the wooden stake in the psychiatric lobby vampire heart ever since their publication in 2003.

Previously a Research Scholar on the Medical Research Council of Canada amongst his many other senior posts, Dr Carruthers is without doubt one of the greatest ME/CFS experts alive in the world today in regard to criteria and guidelines over this neurological illness, classified as such by the World Health Organisation under ICD.10 G93.3.

It was this man's expert witness testimony that the Legal Services Commission was refusing to allow us to place before the Judge together with other expert testimony on the issue of Randomised Clinical Trials - the very base upon which these entirely flawed Guidelines have been predicated.

Had this Legal Services Commission funding refusal been allowed to stand, it would have represented the most crashing injustice and would have naturally caused worldwide outrage.

We are now pleased to report that on the 20 February 2008, the Legal Services Commission were obliged to reconsider their position after the excellent work carried out by Saunders Solicitors LLP and The One Click Group conjoined in dedicated advocacy for patients. 

We would like to thank the Legal Services Commission for this latest decision and take this opportunity to gently remind them of their mission statement that announces:

"Our work is fundamental to social and legal justice. In a democratic society all citizens have a right to access justice and get a fair trial."

It is to this government-funded quango’s credit that they finally elected to see the legal light.

I could go on at considerable length regarding the machinations of a High Court trial such as this that the British government simply does not want to happen, but it would serve no practical and useful purpose to blow the lid off the proceedings at this stage. What presently matters is that we have at last been granted the funding for our expert witnesses and our case is now full-steaming ahead.

Sir Winston Churchill, British politician 1874 -1965, knew what he was talking about when he said, "The chain of destiny can only be grasped one link at a time."  We have grasped our latest link most firmly and are now on to the next, employing the vice-like grip on your behalf for which One Click has become so famous.

I would like to personally thank the expert witnesses who are providing pro bono medical testimony for our case in the High Court.

I would like to particularly thank Saunders Solicitors LLP for their superb handling of legal events and also to thank our barrister Kate Marcus from Doughty Street Chambers who is now in a position to work up our expert evidence.

But above all I would like to thank YOU.  All of you from around the world who are making this case possible. 

I quote from the document Very Simply We Did Ithttp://tinyurl.com/33evmu): “What this campaign has so starkly illustrated is that it is entirely possible for patients and their extensive friends around the world to band together and fight back to correct injustice. The days of the Expert Patient and their associates making their voices formally and legally felt have now arrived at last thanks to you all."

I will be writing to you all further anon as our legal challenge of the appalling CFS/ME NICE Guidelines in the High Court progresses.  Some of the information that I will doubtless have to impart to you all in the future may well rock you toyour foundations.

Onwards and upwards dear friends.  Our legal course is set fair.

Jane Bryant
Director
The One Click Group

 

More Testing that may be Abnormal

Specific correlations between muscle oxidative stress and chronic
fatigue syndrome: a working hypothesis.


Journal: J Muscle Res Cell Motil. 2008 Feb 15 [Epub ahead of print]

Authors: Fulle S, Pietrangelo T, Mancinelli R, Saggini R, Fanò G.

Affiliation: Ce.S.I.Center for Research on Ageing, Università "G.
d'Annunzio", Chieti-Pescara, Italy.

NLM Citation: PMID: 18274865


Chronic fatigue syndrome (CFS) is a relatively common disorder
defined as a status of severe persistent disabling fatigue and
subjective unwellness. While the biological basis of the pathology of
this disease has recently been confirmed, its pathophysiology remains
to be elucidated. Moreover, since the causes of CFS have not been
identified, treatment programs are directed at symptom relief, with
the ultimate goal of the patient regaining some level of pre-existing
function and well-being.

Several studies have examined whether CFS is associated with: (i) a
range of infectious agents and or immune disturbance; (ii) specific
changes of activity in the central or peripheral nervous systems; and
(iii) elevated stress periods, which may be associated with the
pathology via genetic mechanisms. The role of oxidative stress in CFS
is an emerging focus of research due to evidence of its association
with some pathological features of this syndrome.

New data collectively support the presence of specific critical
points in the muscle that are affected by free radicals and in view
of these considerations, the possible role of skeletal muscle
oxidative imbalance in the genesis of CFS is discussed.

 

Intracellular immune dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome: state of the art and therapeutic implications.

Journal: Expert Opin Ther Targets. 2008 Mar;12(3):281-9.

Authors: Nijs J, Frémont M.

Affiliation: Vrije Universiteit Brussel, Faculty of Physical
Education & Physiotherapy, Department of Human Physiology, Building
L, Pleinlaan 2, 1050 Brussels, Belgium. Jo.Nijs@vub.ac.be

NLM Citation: PMID: 18269338


BACKGROUND: Evidence in support of intracellular immune dysfunctions in people with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is accumulating, but few studies have addressed
intracellular immunity as a potential therapeutic target.

OBJECTIVE: To provide an overview of our present understanding of
intracellular immunity in ME/CFS, to relate the intracellular immune
dysfunctions to other aspects of the illness like decreased natural
killer cell function, the presence of infections and poor exercise
performance, and to point to potential therapeutic targets.

METHODS: An in-depth review of the scientific literature of
intracellular immunity in people with ME/CFS was performed.

RESULTS/CONCLUSION: From the scientific literature it is concluded
that proteolytic cleavage of the native RNase L enzyme is
characteristic of the dysregulation of intracellular immunity in
people with ME/CFS
, but the origin of the dysregulation is
speculative. There is increasing evidence for immune cell apoptosis
and upregulation of various aspects of the 2'-5' oligoadenylate
(2-5A) synthetase/RNase L pathway in ME/CFS.
This review provides the
theoretical rationale for conducting studies examining the
effectiveness of direct or indirect drug targeting of the 2-5A
synthetase/RNase L pathway in ME/CFS patients.

Finding Dr. Right

CFS patients often have difficulty finding a doctor who will listen and believe that you are really ill, instead of jumping to the quick conclusion that fatigue=depression.  Here are some tips.

http://www.cnn.com/2008/HEALTH/02/14/ep.finding.dr.right/index.html

Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.

ATLANTA, Georgia (CNN) -- A few years back, Amy went on a search for a new doctor. She had to. Her old doctor fired her. 

The search for a new doctor can have a lot of parallels to the search for just the right mate.

Amy never dreamed her doctor would ditch her, but there she found herself, reading his certified letter giving her 30 days to find a new physician. After a few moments of soul searching -- Had she asked too many questions? Brought in one too many Internet printouts? -- Amy set out to find her perfect doctor match.
"I was more than ticked off. I'd been with him for almost 10 years," says Amy (that's not her real name; because of the contentious nature of her relationship with her doctor she asked to use a pseudonym). "It was a lot of stress finding a new doctor I could trust."

Breaking up, finding a new partner, hoping for the perfect match: Sound a lot like relationships? That's not a coincidence. Both involve trust, vulnerability, and seeing your most private body parts. "I consider the doctor-patient relationship to be as intimate as a life partnership," says Dr. Vicki Rackner, a professional patient advocate. "There are lots of nice people out there, but you would not want to marry most of them."

Here from Amy, Rackner, and others is advice about how to find Dr. Right.

1. Date before you get married

"Just as you would 'do' coffee on a first date instead of a weekend together, so, too, go to the first appointment with a problem of a limited scope, like a mole or a thyroid check," Rackner advises.

You can also go with no problem at all -- make an appointment to just chat with the doctor to get a feel whether you like him or her. Be aware, though, that as with dating, first impressions might be a bit rosy. " 'Meet the doctor' visits are nice, but everybody's on their best behavior, and there's no stress," says Dr. Michael Victoroff, another patient advocate.

For a list of questions to ask on the first date, www.ahrq.gov/consumer/qnt/qntdr.htm click here.

2. Check them out on the Internet

If you Google a guy or gal you've started to date, Google a prospective new doctor, too. And why not go to MySpace and FaceBook -- you never know what you'll find.

Even more important, there are loads of Web sites that keep objective information on doctors (sadly, these sites don't exist for dating!). Check on training and board certification at the http://www.ama-assn.org/ American Medical Association. Find out if they're board certified in a particular specialty by clicking http://www.abms.org/Who_We_Help/Consumers/verifying.aspx here. Several Web sites (such as http://ratemds.com/social/ RateMDs.com and http://www.healthgrades.com/ HealthGrades.com) also have doctor ratings -- make sure you find out what criteria they use.

3. Check out the family

Remember, you're not just marrying the doctor. You're marrying the whole family, which for a doctor means the office staff. They're way more important than you might think. When you're feeling desperately ill, you're at their mercy to squeeze you into a packed schedule. "A great doctor who has a grouchy receptionist, rude nurse, careless assistant and obnoxious partner is going to frustrate you," Victoroff says.

4. Ask your friends to fix you up.

But choose your friends carefully. If you're a Type A person who likes to ask lots of questions, asking your meek friend for a recommendation might end up in a mismatch. Choose someone who thinks more the way you do.

5. Go with your gut

This is perhaps the most important. It's perfectly OK to reject doctors simply because there's something about them that makes you feel a bit ill at ease. "I would suggest that patients actually like their provider," says Dr. Michael Woods, a surgeon who founded a group called http://www.actcivil.com Civility Mutual to help improve communication between patients and health care providers. "Patients should, after their first visit, have a sense of trust."

After her "divorce," Amy found love again by following this advice. Her new doctor doesn't seem to be offended when she brings in information off the Internet or asks a lot of questions. "She seems to respect the fact that I have a lot of questions. She takes her time with me and isn't in a rush," Amy says.

Here's a final hint from someone who literally wrote the book on finding a new doctor. Hal Alpiar, author of "Doctor Shopping: How to Choose the Right Doctor for You and Your Family," says think about what you're looking for in a doctor. For example, objective information is important for a surgeon ("Doctor, how many times have you performed gastric bypass surgery?") but bedside manner may be more important for an internist. "You're not going to find a doctor who has everything. Those are the Disney doctors," Alpiar says. "Real doctors aren't perfect." 

* * *

Be forewarned that a complaint-free record may not be accurate.  I have made written complaints about the doctors who committed malpractice on me, and those complaints were not logged because the malpractice didn't cost me life or limb.  Our state Medical Board tells me they have a limited budget and therefore only investigate serious matters -- death and amputation of the wrong limb -- my complaint of being permanently unable to work as a result of malpractice wasn't serious enough to warrant investigation.

So, I would also check the case index at courthouses in your county and surrounding counties to see whether the doctor has been sued.  If he has, request the file and decide whether it's something that worries you; one of mom's doctors has a spotless record except for one "defective baby" lawsuit where every doctor in the medical group was sued by distraught parents who refused to believe the problem was genetic rather than the doctors' fault.  

Or you may find a case like mine, where the legal briefs make clear that this doctor has a pattern and practice of verbally abusing divorced women who think that there's anything physically wrong with them and refuse to accept his automatic diagnosis that divorce causes depression and no other diagnosis is possible or necessary.

Top 10 Tests that SHOULD be done

Though the CDC steadfastly says there are no tests for M. E./CFS, there are in fact a number of nonroutine tests that delineate Myalgic Encephalomyelitis clearly and can be used for diagnostic or disability purposes. Evidence-based diagnostic tests are superior to questionnaires based on subjective symptoms or shoddy criteria like the Fukuda definition or Reeves wrongheaded empirical definition.

The tests listed below also, through the work of scientists & clinicians, firmly contradict the falsehood that CDC claims there are no tests for this disease.

To the credit of the 2003 M.E./CFS Consensus Criteria, they list some of the tests that can delineate the disease: http://www.mefmaction.net/Portals/0/docs//ME-CFS-Overview.pdf

**

TOP 10 TESTS for MYALGIC ENCEPHALOMYELITIS & ""CFS"" LABELED PATIENTS:

TEST #1: Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration.

This test is mentioned in the book Disability and CFS: Clinical, Legal and Patient Perspectives with this comment by Dr. Daniel Peterson: "One objective and reproducible technique for determining and measuring functional disability that should be used consistently is Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration. The test is well established, sedentary and ill norms are published and the technology is relatively inexpensive and quite available. Approximately 1700 patients [as in 1997] have been tested over the past 10 years and the test is now used on the initial visit to screen patients, to direct rehabilitation, and adjunctively to determine disability."

Diminished Cardiopulmonary Capacity During Post-Exertional Malaise

(Abstract) J. Mark VanNess PhD, Christopher R. Snell PhD, Staci R. Stevens

http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/CirculatoryArticles/2007VanNessSerialStressTest.pdf

Conclusion

In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in CFS patients. However, the results from the second test indicate the presence of a CFS related post-exertional malaise. It might be concluded then that a single exercise test is insufficient to demonstrate functional impairment in CFS patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to CFS.

Legal and Scientific Considerations of the Exercise Stress Test Ciccolla, Stevens, Snell, Van Ness, ©©2007 The Haworth Press http://www.cfids-cab.org/MESA/Ciccolella.pdf

"This article examines the legal and scientific basis on which an exercise stress test can provide medically acceptable evidence of disability for the CFS patient." This research group's excellent work proves the post-exertional disability that ME & CFS patients suffer, much worse on average than heart failure and COPD patients.

TEST #2: Brain neuro SPECT & PET scans and MRI brain scan

The CDC statement against using SPECT & MRI scans in the diagnosis of CFS is inaccurate, as shown by the many studies referred to below. It is also dangerous for physicians to be misguided in this way by the CDC.

(Quote >From CDC web site http://www.cdc.gov/cfs/cfsscreening.htm) "Magnetic resonance imaging scan: single-photon emission computed tomography: Some CFS researchers have observed apparent differences in the cranial blood flow between CFS patients and controls. These studies remain unconfirmed, and imaging tests should not be performed as a diagnostic technique for CFS."

Evidence From recent 2007 IACFS/M. E. conference: New methods in viral studies using refined technology show further abnormalities in subsets of ME/CFS patients. Increased use of instruments like MRI, SPECT/SPET, PET and fMRI show some of the abnormalities in functioning that patients with ME/CFS experience on a daily basis but these may not have practical application if a patient cannot have this testing done. A number of abnormalities with reduced responsiveness on fMRI is an essential feature of ME/CFS.

Brain imaging shows that, amongst other abnormalities, ME/CFS patients have reduced blood flow to the brain (especially to areas that are involved in autonomic nervous system functioning and in sleep, concentration and pain, including the pre-frontal cortices, the anterior cingulate and the cerebellum); altered patterns of brain activation; reduced grey matter volume; altered serontonergic neurotransmission and reduced acetyl-carnitine uptake.

A collaboration of researchers from Spain, Belgium and Australia used SPET scanning to observe patterns of brain activity; they found that the brain abnormalities correlated with abnormal immune results.

Patients with ME/CFS require more brain regions to perform tasks, ie. they have to work harder to achieve the same results as healthy controls.

One particular area of the brain - the Wernicke area, essential for understanding and formulating coherent speech-showed evidence of reduced activity after exercise.

Proton resonance spectroscopy showed greatly increased levels of brain metabolites (lactate levels were 300% higher than in controls).

According to Dr Tae Park from South Korea, the unexplained bright spots on MRI scans of some ME/CFS patients are evidence of an "arteriolar vasculopathy" or a blood vessel disease. He believes ME/CFS is a "systemic micro-vascular inflammatory process" - a process that would affect not only the brain or the heart or the muscles, but potentially every organ system in the body. Dr Park found not only capillary inflammation and perivascular cuffing (the accumulation of immune cells that surround injured blood vessels), but that all the ME/CFS patients in his study demonstrated remarkably reduced renal blood flow. Dr Park noted that diabetics with renal vascular disease also complain of profound fatigue.

Dr Hiro Kuratsune from Japan gave a summary of what is known about brain function in ME/CFS. It has been known for over a decade that frontal and temporal lobe blood flow is reduced in ME/CFS, and that exercise exacerbates this reduced blood flow for up to 72 hours. The new evidence is that elevated elastase and RNase-L levels correlate with reduced blood flow. It is known that the MRI is abnormal in the majority of people with ME/CFS due to numerous T2 weighted hypertintense foci, with evidence of demyelination.

Patients with more brain abnormalities tend to be more physically impaired.

The remarkable similarity in the brain images of patients with ME/CFS and multiple sclerosis was noted. Dr Gudrun Lange from New Jersey, USA, stated what can be said with certainty about the central nervous system findings in ME/CFS: 1) the major cognitive problem seen is in information processing 2) studies showing reduced cerebral blood flow are starting to show consistency 3) there is a problem with serotonergic neurotransmission in the hippocampus and anterior cingulate regions 4) there are spinal fluid abnormalities 5) fMRI studies are showing altered patterns of brain activation.

(See references at the end of this article for more Neuroimaging evidence for ME/CFS diagnosis.)

TEST #3: Mitochondrial Dysfunction

(2 possible tests):

1). The magnetic resonance spectroscopy(MRS) bran scan is a most informative of the bran scans for ME/CFS. It indicates mitochondrial dysfunction. Check co-cure.com's archives for more info. on MRS as well as google Dr Cheney's MRS scan data for his patients. More info from a Dr. Cheney patient at this website: http://users.adelphia.net/~sherry423/GuaiWhey/fmmito.htm

***MRS scanning has found abnormally high lactic acid spikes near around the hippocampus in PWME brains which indicates mitochondrial dysfunction, a central feature being found in just about all cases through the UKs BioLab testing. An MRI is good for ruling out gross abnormalities such as tumors and obvious areas of brain damage while the SPECT can help verify hypoperfusion in the brain.

2). Dr. Myhill in UK has a lab that screens for mitochondrial dysfunction (one test that she has opened up to patients from US) http://www.drmyhill.co.uk/article.cfm?id=389

From 2007 IACFS/M. E. Conference: Dr Jonathan Kerr from London stated that his gene expression studies are finding three main abnormalities in ME/CFS patients: these involve the immune system, mitochondrial function and G-protein signalling. There are seven genes upregulated in ME/CFS - those associated with apoptosis, pesticides, mitochdonrial function, demyelination and viral binding sites. Kerr mentioned three genes in particular: gelsolin, which is involved in apoptosis and amyloidosis; one that is upregulated by organophosphates, and a mitochondrial gene involved in the demyelination of nerves.

Also,

Mitochondrial abnormalities in the postviral fatigue syndrome. Behan WM, More IA, Behan PO Department of Pathology, University of Glasgow, Scotland. Acta Neuropathol 1991;83(1):61-5

""We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.""

TEST #4: TH1/TH2 imbalance

TH1/TH2 Cytokine Production (Immunosciences Lab)

Th1/Th2 Imbalance There are two general branches (Th1/Th2) of the immune system. Some patients appear to have an over activation of the anti-inflammatory (Th2) branch and an under activation of the pro-inflammatory (Th1) branch of the immune system. This could cause increased rates of allergy and sensitivity on the one hand and difficulty fighting off pathogens on the other.

Further explanation from Dr. Cheney: http://www.anapsid.org/cnd/diagnosis/cheneyis.html

TEST #5: Natural Killer Cell Function (Activity) testing

(Immunosciences Lab)

Natural Killer (NK) and T-cell Dysfunction NK and T-cells are two other components of the immune response to pathogens. A set of chronic fatigue syndrome (ME/CFS) patients have been shown to have reduced NK cell numbers and poor NK and T-cell functioning. These problems also could interfere with the ability of the immune system to find infected cells and kill them. Intriguingly some researchers believe that chronic immune activation due to an underlying chronic infection has caused these cells to 'burn out'.

TEST #6: abnormalities of the 2-5A pathway (RNase-L ratio):

37kDa 25A RNase L immunoassay: protein, activity, PKR cleavage, & elastase activity assays testing at Redlabs: http://www.redlabsusa.com/cfs/

Impaired Cellular Immune Response Two abnormalities in the responses cells have to infection in the 'interferon pathway' have been documented. An antiviral enzyme in this pathway called the RNase L has been shown to be fragmented in many patients. A subset of chronic fatigue syndrome (ME/CFS) patients also display increased activity of another enzyme called protein-kinase R (PKR) that is involved in killing cells infected with pathogens. These problems suggest the immune systems of chronic fatigue syndrome (ME/CFS) patients could have troubles finding pathogens and killing the cells they've infected.

(Note: Immune function Test #s 4-6 are objective markers of pathophysiology and severity)

From January 2007 International Conference on ME/CFS summary of immunological abnormalities:

Anthony Komaroff (Professor of Medicine, Harvard) summarised the immune abnormalities that have been demonstrated in ME/CFS. These include activated CD8 (T cells); poorly functioning Natural Killer cells; novel findings -seen only in ME/CFS -- of abnormalities of the 2-5A pathway (RNase-L ratio); cytokine abnormalities (pro-inflammatory dysregulation); increased TGF, and 27 times more circulating immune complexes than in controls.

(More Immune Function references at the end of this article)

TEST #7: Virology Viral antibodies, including Coxsackie Bbacteria, including HHV6mycoplasma, Wisconsin Viral Research Group http://www.wisconsinlab.com/

Dr Dharam Ablashi from Santa Barbara, USA, showed that RNase-L was found to correlate with HHV-6 infection in ME/CFS and that RNase-L protein is a marker for active infection.

Some patients clearly have a persistence of virus in their brain.

Enterovirus infections have previously been reported in UK studies but have not been much explored by US researchers. Enteroviruses are a genus of RNA viruses that includes echovirus, coxsackie virus and poliovirus. In a recent US study by John Chia from California of 108 patients with ME/CFS who underwent gastric biopsies, 100 revealed chronic inflammation and 80% were positive for VP1 (enteroviral capsid protein - first used by Professor James Mowbray et al in the UK in 1988). Enteroviral RNA was detected in 33% of patients. "Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. Journal of Clinical Virology 37 Suppl. 1 (2006) S33S38 Andreas M. Kogelnik a, Kristin Loomis b, Mette Hoegh-Petersen c, Fernando Rosso a,c, Courtney Hischier b, Jose G. Montoya a,c,* *Stanford University School of Medicine, Stanford, CA, USA *HHV-6 Foundation, Santa Barbara, CA, USA *Palo Alto Medical Foundation Research Institute, Palo Alto, CA, USA

Symptoms observed in ME/CFS are compatible with a viral aetiology.

Many infectious agents have been cited as implicated in ME/CFS including EBV, Lyme, parvovirus, enteroviruses, Q fever, RRV, mycoplasma and HHV-6.

Over the last ten years there has been increasing evidence that infection is most likely to be a prime cause of ME/CFS.

TEST #8: Heart Function (at least 2 possible tests)

1). Impedance Cardiography (available at many teaching hospitals) http://www.chadwickmedical.com/svc_imp_cardio.htm http://www.cardiodynamics.com/

(Peckerman procedure: 10 minutes lying down FOLLOWED by

5 minutes standing up) http://www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf

http://www.webmd.com/news/20030414/tricky-heart-may-cause-chronic-fatigue

Peckerman Q&A: http://www.cfids.org/archives/2003rr/2003-rr2-article01.asp

2). 24 Hour Holter Monitoring: repetitively oscillating Twave inversions and/or Twave flats during 24hour monitoring. Note: this pattern may not be reported or subsumed under nonspecific Twave changes. More information here: http://www.cfsviraltreatment.com/ http://www.cfids-cab.org/MESA/Lerner.html

**Important note:

If the doctor insists on a regular exercise stress test, then these 2 studies below should be referenced, which show that a stress test must be followed the next day with another one to show the extreme disability.

"Legal and Scientific Considerations of the Exercise Stress Test" J of Chronic Fatigue Syndrome, Vol 14, No. 2, 2007, pp. 61-75 Margaret Ciccolella EdD, JD, Staci R. Stevens MA, Christopher R. Snell PhD, Mark Van Ness PhD

ABSTRACT. This article examines the legal and scientific bases on which an exercise stress test can provide medically acceptable evidence of disability for the Chronic Fatigue Syndrome (CFS) patient. To qualify for disability benefits, a claimant must establish the existence of a serious medically determinable impairment (MDI) that causes the inability to work. The single stress test has been used to objectively establish whether a claimant can engage in ""substantial gainful employment"" and is an important determinant of the award or denial of benefits. A review of case law indicates problems associated with a single test protocol that may be remedied by a ""test-retest"" protocol. The results of a preliminary study employing this approach indicate that the test-retest protocol addresses problems inherent in a single test and therefore provides an assessment of CFS related disability consistent with both medical & legal considerations. is available in PDF at http://www.cfids-cab.org/MESA/Ciccolella.pdf

Diminished Cardiopulmonary Capacity During Post-Exertional Malaise Journal of Chronic Fatigue Syndrome, Vol. 14, No. 2, 2007, pp. 77-85 J. Mark VanNess PhD, Christopher R. Snell PhD, Staci R. Stevens is available in PDF at http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/CirculatoryArticles/2007VanNessSerialStressTest.pdf

**Also, in the whole area of neuro-cardiology is the tilt table testing since Dr. Charles Lapp says in his recommendations for people with this disease, up to 97% demonstrate vasovagal syncope (neurally mediated hypotension) on tilt table testing. Canadian Consensus document (p. 6 in the pamphlet, p. 13 in the PDF file under the title Autonomic Manifestations describes this orthostatic intolerance: http://www.mefmaction.net/Portals/0/docs//ME-CFS-Overview.pdf

Here's the first paragraph of a very good explanation from the document which includes some other very important information regarding circulation problems in the M.E./CFS:

6. Autonomic Manifestations Chronic Orthostatic Intolerance (COI), the inability to sustain upright activity (standing, sitting or walking), is very common and may be an important component in ME/CFS. Upon limited standing, the patient experiences overwhelming exhaustion, an urgency to lie down, confusion, malaise, and worsening of other symptoms. Sitting and light walking are tolerated better than standing still, but no upright activity is tolerated well. Lying down helps alleviate symptoms. Tilt-table testing may be helpful in diagnosis but some patients may have a normal tilt-table test and still have severe COI. Quiet standing in the office allows for observation and monitoring the blood pressure and pulse.

NOTE: This just only be done with extreme CAUTION with someone standing beside the patient at all times in order to support him/her if s/he begins to feel weak!

(Note: the in-office tilt table testing described in this paragraph are made more specific by Dr. Mary Schweitzer in a detailed description below the references at the end of this post after the references)

Additionally, most of us are aware that Dr Paul Cheney found evidence of diastolic (cardiac) dysfunction in ME/CFS, with evidence of another cardiac abnormality (patent foramen ovale, or PFO). This results in hypoxia (low oxygen levels relative to metabolic needs). Cheney stated that the cardiac index of ME/CFS patients is so severe that it falls between the value of patients with myocardial infarction (heart attack) and those in shock.

On September 9, 2006, Paul Cheney, MD, PhD, presented a seminar titled "CFS: The Heart of the Matter." This outstanding seminar contains important, fascinating and unique material that will eventually be published. There is an overview of chronic fatigue syndrome, an in-depth look at the cardiovascular issues in CFS, a new model of the illness, and a full update on Dr. Cheney's latest study, including the treatment protocol. http://www.dfwcfids.org/videos/video200609cheney_about.shtml

Also, helpful is this testing showing impaired blood flow: Hypercoagulability: flow cytrometry fibrinogen, thrombin/anti-thrombin complexes

TEST #9: Neurocognitive testing & sleep studies

Neurocognitive: To ascertain neurological abnormalities in brain neuro SPECT scan, disability representative may have a licensed psychologist perform a battery of 6 neurocognitive tests to test mental performance.

Cognitive performance: decreased processing speed, working memory, information learning, etc.

Sleep Studies:

Testable Major Sleep Dysfunction: This can include all forms of sleep dysfunctions. All or any of the following may be present: (a) impaired sleep efficiency, (b) significant fragmented sleep architecture, (c) movement arousals, particularly if there is an associated pain syndrome, (d) absence or significant decrease of type 3 and 4 sleep, (e) abnormal REM sleep pattern (f) changes in daytime alertness and (g) sleep reversals.

TEST #10:

Endocrine testing: * CT scans may show reduced adrenal gland size *thyroid hormone levels with attention to bioavailability of T3 & those with reduced level should be checked for selenium as it

regulates conversion of T4 to T3 *reduced HPA function (see this article):

"Diagnosis and Treatment of Hypothalamic-Pituitary-Adrenal

(HPA) Axis Dysfunction in Patients with Chronic Fatigue Syndrome

(CFS) and Fibromyalgia (FM)," J of Chronic Fatigue Syndrome,

Vol. 14, No. 3, 2007, pp. 59-88, by Kent Holtorf MD is available in PDF at http://www.cfids-cab.org/MESA/Holtorf.pdf

**

These Top 10 Tests also would be appropriate considering Dr. Ramsey's 1986 definition & criteria:

"A syndrome initiated by a virus infection (TESTS #4, 5, 6, 7), commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness (TEST #8) sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological (TEST #2), cardiac (TESTS #1, 8) or endocrine (TEST #10) disability are also recognised.

Characteristic features include: (1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance - an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery ; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems (TEST #9).

(3) Musculo-skeletal dysfunction (TEST #3) in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course"

**

The above list and additional references support the obvious fact that Reeves' "do not give these tests" list on the CDC website is truly unfortunate. CDC website states (in the material for professionals to read): http://www.cdc.gov/cfs/cfsdiagnosisHCP.htm

"No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time." In light of this, there is a need to focus on and publicize biomarkers, treatments resulting from biomarkers, and peer-reviewed published research long ignored by CDC, which would result in doctors confidence in the diagnosis of Myalgic Encephalomyelitis and the return to the name Myalgic Encephalomyelitis or another suitable medical name for that ICD code.

Dr. Jonathan Kerr in his gene studies included patients who had been diagnosed with M.E., and they generally already met the Fukuda definition because it's so much looser even though his research only mentions CFS-Fukuda.

**

Steven Du Pre

Blood Tests OK?

Tired? But Blood Tests OK? http://www.valdezlink.com/re/tiredtestsok.htm

 

More on Test/Re-Test and Postexertional Malaise

Thanks to Tom Kindlon for this one!

 (May be reposted)

  I think these exercise test-retest protocols make sense when one considers
  what Dr Melvin Ramsay described:

  "Muscle fatigability. Even after a minor degree of physical excercise, 3 or
  more days may relapse before full muscle power is restored. This feature is
  unique and is the "sheet anchor" of diagnosis. In moderate cases there may
  be normal  muscle power in remission."

  "This applies particularly to the dominant clinical feature of
  profound fatigue. While it is true that there is considerable
  variation in degree from one day to the next or from one time of the
  day to another, nevertheless in those patients whose dynamic or
  conscientious temperaments urge them to continue effort despite
  profound malaise or in those who, on the false assumption
  of 'neurosis', have been exhorted to 'snap out of it' and 'take
  plenty of exercise' the condition finally results in a state of
  constant exhaustion.
This has been amply borne out by a series of
  painstaking and meticulous studies carried out by a consultant in
  physical medicine, himself an ME sufferer for 25 years. These show clearly
  that recovery of muscle power after exertion is unduly prolonged. After
  moderate exercise, from which a normal person would
  recover with nothing more than a good night's rest, an ME patient
  will require at least 2 to 3 days while after more strenuous exercise
  the period can be prolonged to 2 or 3 weeks or more. Moreover, if
  during this recovery phase, there is a further expenditure of energy
  the effect is cumulative and this is responsible for the unrelieved
  sense of exhaustion and depression which characterises the chronic
  case."

  Tom

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

  http://www.cfids.org/cfidslink/2008/020602.asp?tr=y&auid=3349064

  Science and Legal News on Postexertional Malaise

  From 2006 to 2007, the CFIDS Association of America, through your donations,
  funded a study by investigators at the University of the Pacific that
  investigated the physiologic basis of postexertional malaise in CFS. Two
  papers describing interesting results from this study were published
  back-to-back in the December issue of the Journal of Chronic Fatigue
  Syndrome.

  Both papers address testing the functional capacity of CFS patients at more
  than one time point interval-what the investigators call a "test-retest"
  approach. One paper, "Diminished Cardiopulmonary Capacity During
  Postexertional Malaise," identifies a reproducible physical marker when CFS
  patients are subjected to an exercise test-retest protocol. The other paper,
  "Legal and Scientific Considerations of the Exercise Stress Test," explores
  the use of a test-retest protocol for assessing CFS-related disability.

  Physical exercise often exacerbates the symptoms that characterize CFS,
  resulting in a postexertional relapse that can last for 24 hours or more. In
  fact, postexertional malaise is a hallmark of CFS, and many investigators
  have used exercise testing to identify markers of fatigue. Most (basic,
  non-CFS) exercise physiology studies focus on the ability of the body to
  transport and use oxygen. To survive and to carry out activity, the body
  must extract oxygen from the atmosphere and transport it to every cell in
  the body, where it's used for essential metabolic processes. Oxygen and
  energy are inexorably linked.

  When an exercise stress test is done in a lab, the subject performs a
  physical activity (like riding a stationary bicycle) while wearing a mask
  that determines how much oxygen is consumed-otherwise known as VO2, for
  volume of oxygen consumed. Blood pressure and heart rate are also monitored
  the entire time. An important aspect of the exercise test is to ensure that
  the subject is exerting maximal physical effort and not feigning fatigue.
  This is done by calculating a respiratory quotient that measures the
  chemical and physical changes that occur during metabolism.

  Reduced capacity is evident using the test-retest approach
  ----------------------------------------------------------

  In the cardiopulmonary capacity paper by J. Mark VanNess, PhD, Christopher
  Snell, PhD, and Staci Stevens, the research team studied six CFS patients
  and six healthy but sedentary control subjects by putting them through an
  exercise test on two consecutive days. The first exercise test showed no
  differences between CFS patients and healthy controls. However, after the
  second exercise test 24 hours later, CFS patients displayed significantly
  decreased oxygen consumption-both when compared to the mean, or middle, VO2
  of their first test and when compared to the VO2 of the healthy controls
  during the second test. The authors concluded that "the fall in oxygen
  consumption among the CFS patients on the second test suggests metabolic
  dysfunction rather than sedentary lifestyle as the cause of diminished
  exercise capacity in CFS."

  The researchers noted that the CFS patients demonstrated maximal effort on
  both exercise tests. They also suggest that decreased oxygen consumption on
  day 2 is a distinctive feature of CFS since cardiopulmonary exercise
  test-retest protocols in other conditions, such as pulmonary hypertension,
  cystic fibrosis and obstructive pulmonary disease, do not show a similar VO2
  decrease. This strongly supports the suspected oxidative and metabolic
  dysfunction that has been hypothesized as associated with CFS pathology.

  Implications for CFS disability claims
  --------------------------------------

  The paper by Margaret Ciccolella, EdD, JD, and Stevens, Snell and VanNess
  examined the legal and scientific considerations of the exercise stress test
  for CFS disability claims-demonstrating the shortfalls of using a single
  test to determine disability in people with CFS.

  The exercise stress test is one of several tools used by the Social Security
  Administration (SSA) to determine disability. For CFS disability, as with
  all other conditions, the SSA requires two things: proof of the existence of
  a medically determinable impairment and the inability to do any kind of
  work. The SSA considers an abnormal exercise test an objective medical
  impairment for CFS.

  In order to receive disability benefits for CFS,the evidence for both the
  medically determined impairment and inability to work must be objective. An
  exercise test is objective, but as the test-retest study (described above)
  demonstrates, a single exercise test does not show a difference in oxygen
  consumption between people with CFS and healthy controls. Used alone, a
  single exercise test may not return compelling evidence for a CFS disability
  claim. However, a second test conducted 24 hours after the first exercise
  challenge likely would provide the objective documentation of postexertional
  malaise. According to the authors, the initial data from this study suggests
  that "the test-retest format offers a superior basis to establish disability
  consistent with SSA policy and other relevant case law."

  This research, funded through the CFIDS Association's research program, is
  just one example of how your financial support is helping to increase our
  knowledge of CFS and lead to practical benefits for CFS patients. For more
  information about the studies that led to these papers, see "Exercise
  Testing Uncovers Abnormalities in CFS."
  http://www.cfids.org/cfidslink/2007/030704.asp

  VanNess M, Snell C, Stevens S. Diminished cardiopulmonary capacity during
  post-exertional malaise. Journal of Chronic Fatigue Syndrome 2007; 14(2):
  77-85

  Ciccolella M, Stevens S, Snell C, VanNess M. Legal and scientific
  considerations of the exercise stress test. Journal of Chronic Fatigue
  Syndrome 2007; 14(2): 61-75

  (Unfortunately, the Journal of CFS is not indexed through PubMed and other
  online medical resources. Contact Haworth Press
  http://www.haworthpressinc.com/  to obtain copies of the December 2007
  issue.)

  ____________________

  Research matters. Through donations from individuals like you, the CFIDS
  Association of America has become the largest source of CFS research money
  aside from the federal government.

  If accelerating the pace of CFS research matters to you, donate now
  http://mycausecfs.kintera.org/cfidsassn  .


Extracts from descriptions of ME by Dr Melvin Ramsay:

"Muscle fatigability. Even after a minor degree of physical excercise, 3 or
more days may relapse before full muscle power is restored. This feature is
unique and is the "sheet anchor" of diagnosis. In moderate cases there may
be normal muscle power in remission."

"This applies particularly to the dominant clinical feature of
profound fatigue. While it is true that there is considerable
variation in degree from one day to the next or from one time of the
day to another, nevertheless in those patients whose dynamic or
conscientious temperaments urge them to continue effort despite
profound malaise or in those who, on the false assumption
of 'neurosis', have been exhorted to 'snap out of it' and 'take
plenty of exercise' the condition finally results in a state of
constant exhaustion. This has been amply borne out by a series of
painstaking and meticulous studies carried out by a consultant in
physical medicine, himself an ME sufferer for 25 years. These show clearly
that recovery of muscle power after exertion is unduly prolonged. After
moderate exercise, from which a normal person would
recover with nothing more than a good night's rest, an ME patient
will require at least 2 to 3 days while after more strenuous exercise
the period can be prolonged to 2 or 3 weeks or more. Moreover, if
during this recovery phase, there is a further expenditure of energy
the effect is cumulative and this is responsible for the unrelieved
sense of exhaustion and depression which characterises the chronic
case."

February Pain Monitor

            PAIN MONITOR
            February 2008
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            Forward to a Friend
            The Pain Monitor is a monthly electronic publication of the American Pain Foundation. We want to keep you abreast of recent media attention given to topics that are related to pain care or living with pain. Below are links to news articles, feature stories and timely information that have come to our attention. Please pass them along to others who might benefit. We encourage you to send any comments you may have to the authors or publisher directly. Every voice counts when working towards improving pain care in our nation.

            THE NEWS

            ABC News: "What Is Pain?"
            ABC News has aired three interviews in their online On Call + Pain Management Center, featuring pain management experts including two APF board members. In the first segment, "What Is Pain?," APF Board member and PCAC co-chair Andrea Cooper and her daughter, Maura Hollister, speak about living with chronic pain. APF board member Russell Portenoy, MD and Woodson C. Merrell, M.D., Sc.D. from the Beth Israel Medical Center discuss pain management practice and issues.

            Chronic Fatigue Syndrome and Morning Cortisol Response
            People who suffer from chronic fatigue syndrome (CFS) often endure months of persistent fatigue, muscle pain, and impaired memory and concentration. A new study reveals that abnormally low morning concentrations of the hormone cortisol may be correlated with more severe fatigue in CFS patients, especially in women.

            Sickle Cell Patients in More Pain Than Thought
            In adults with sickle cell disease, pain can occur daily and is much more severe than previously believed, U.S. researchers report.

            Chronic Pain Can Alter the Brain
            Brain scans of people in chronic pain show a state of constant activity in areas that should be at rest, U.S. researchers said, a finding that could help explain why pain patients have higher rates of depression, anxiety and other disorders.

            New Insights Into Genital Pain in Women
            Studies have shown that sexual phobias are rarely the explanation for a condition known as vulvodynia, a chronic discomfort of the vulva that can result in searing or shooting pain when any amount of pressure is placed on the sensitized tissues.

            Abuse History Affects Pain Regulation in Women with Irritable Bowel Syndrome
            UCLA and University of North Carolina researchers have found that women with irritable bowel syndrome (IBS) who have experienced sexual and/or physical abuse may have a heightened brain response to pain that makes them more sensitive to abdominal discomfort.

            New Survey Finds Majority of Americans in Pain; Acute Pain Sufferers Reluctant to Treat
            While the majority of Americans in a national survey reported experiencing pain in the past 12 months, many, especially acute pain sufferers, are reluctant to seek professional help or take prescription pills.

            African Americans Less Likely to Choose Epidurals for Post-Operative Pain Relief
            Minority and low-income patients are less likely than those who are white or more well off to agree to post-surgery epidural pain relief, according to new research from physicians at the University of Pennsylvania School of Medicine. The study, published recently in the journal Anesthesia and Analgesia, examined how race, economic and educational status may influence health care choices when access to care isn't a factor.

            Celebrities Feel Pain Too
            For celebrities, chronic pain presents an additional burden. Even stars sometimes don't know when it's time to get treatment for serious pain.

            Strength Training Eases Chronic Neck Pain
            Strength training exercises can help relieve chronic neck pain, says a Danish study in the January issue of Arthritis Care & Research.

            NSAIDs No Better for Low Back Pain
            When it comes to treating low back pain, non-steroidal anti-inflammatory drugs (NSAIDs) such as naproxen and ibuprofen are no more effective than acetaminophen.

            Low-Back Pain Affects Four Out of Five People
            Back problems are the leading reason that people use CAM. Two researchers discuss, at a NCCAM symposium, their work relating to CAM and low-back pain.

            Intensive Education Helps Back Pain Sufferers Get Back to Work
            People who suffer from short-term lower back pain might be able to return to work sooner if given an intensive individual patient education session from their health care provider, according to a new review from researchers in the Netherlands.

            Strange Creature Immune to Pain
            As vulnerable as naked mole rats seem, researchers now find the hairless, bucktoothed rodents are invulnerable to the pain of acid and the sting of chili peppers. A better understanding of pain resistance in these creatures could lead to new drugs for people with chronic pain.

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            INTERNATIONAL NEWS

            Swiss Study in Mice May Lead to New Pain Drugs
            Enhancing a natural pain-filtering mechanism in the spine helped relieve chronic pain in mice without the unwanted side effects of current pain relievers, Swiss researchers said.
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            APF NEWS
            Power Over Pain Action Network:

            Leaders in the News

            Dionetta Hudzinski, RN, MN, WA POP Action Network Leader and incoming president of the Washington-Alaska Pain Initiative, has taken a lead in challenging WA state guidelines to physicians for prescribing opioids for non-cancer pain.  She was recently featured in the article "Issue of drugs and pain strikes a nerve" in the Yakima Herald and with fellow leader Brenda Sutherland in the Puyallup Herald article "Has the war on drugs gone too far?"

            Penny Ruth Njoroge, an oncology chaplain and POP Action Network Leader from Alabama, was recently interviewed by the Birmingham News. She discussed key issues surrounding pain management, including the dangers of untreated pain and the barriers that exist to effective pain treatment.

            Looking Forward

            Cindy Steinberg, Massachusetts state leader and chapter president of the American Chronic Pain Association was interviewed by ABCNews.com with her local support group about living with chronic pain, treatment options and specific disorders, such as fibromyalgia and RSD.

            Likewise, Missouri state leader Rebecca Rengo, was interviewed by Time, Inc., specifically regarding fibromyalgia and the challenges of its treatment. This will be available for viewing soon on their new health website, link will be available soon.

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            POLICY & ADVOCACY

           DEA Issues Advisory Statement on Methadone
            Effective January 1, 2008, methadone 40mg dispersible tablets will be limited to detoxification and maintenance treatment. Methadone manufacturers agreed to restrict distribution of the methadone 40mg dispersible tablets to those facilities authorized for detoxification and maintenance treatment and hospitals. This means the 40mg tablet will no longer be available through a prescription for pain management.

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            SPOTLIGHT ON PAIN

            Cancer Pain

            Vitamins May Help Cancer-Related Pain
            High-potency vitamins, melatonin supplements, and other complementary remedies may help to relieve the debilitating pain and fatigue experienced by most people with advanced pancreatic cancer, a new study suggests.

            Military/Veterans

            Battle Concussions Tied to Stress Disorder
            About one in six combat troops returning from Iraq have suffered at least one concussion in the war, injuries that, while temporary, could heighten their risk of developing post-traumatic stress disorder, researchers are reporting.

            Pain at the End of Life

            Challenges in Pain Management at the End of Life
            Effective pain management in patients at the end of their lives requires an understanding of pain control strategies.

            Shingles

            Shingles Sends 1 million to U.S. Doctors Each Year
            Shingles sends nearly 1 million Americans to their doctors every year seeking relief from the painful symptoms the virus causes, according to U.S. government statistics released on Wednesday.

            Yoga

            Yoga Antidote for Migraines
            Causes vary, but migraines-whose symptoms include head pain, nausea, dizziness, lethargy, weakness, and difficulty breathing-often result from tension. 

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            SCIENCE & MEDICINE
            Managing Chronic Pain: When Does Morphine Become Less Effective?
            Opioids such as morphine are effective and widely used drugs for the control of pain. Tolerance can develop with repeated administration, but there is some evidence to suggest that tolerance to opioids does not develop when they are used to treat individuals with diseases that are accompanied by inflammation.

            Should Opioid Abusers Be Discharged From Opioid-Analgesic Therapy?
           The clinical practice of discharging patients from opioid therapy when there are concerns about substance abuse or addiction can do significant harm; not just at the level of the individual, but also affecting families, the healthcare system, and society at large.

            Gene Therapy May Be the Basis for Chronic Pain Relief in the Future, Study Finds
            The new technique is known as Adeno-Associated Virus vector-based gene therapy and it allows using a virus a vector to deliver a specific gene into the primary sensory neurons to activate the system that alleviates pain in patients. The system mimics the pain-killing effect of opiate drugs, at least in the animal model used by these researchers.

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            COMPLEMENTARY/ALTERNATIVE MEDICINE

            Materials Can Help You Discuss Complementary/Alternative Medicine
            The National Center for Complementary and Alternative Medicine (NCCAM) offers a free toolkit containing educational materials for physicians, their staff members and their patients. The kit includes a backgrounder; posters; tips for discussing CAM; and a patient wallet card for tracking medications, including CAM therapies. A "patient packet" is available as well. Both items may be ordered online or from the NCCAM Clearinghouse at (888) 644-6226. When ordering by phone, use reference code D392 for the health care professional toolkit; use code D393 when ordering the patient packet.

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            EN ESPANOL
            Qué es la Vulvodinia
            Hechos Rápidos Para su Salud, una publicación del National Women's Health Resource Center incluye información básica, opciones de tratamiento, preguntas para el médico y recoursos sobre vulvodinia
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            WEBSITE OF THE MONTH
            Pain Treatment Topics
            The mission of Pain Treatment Topics is to serve as a noncommercial resource for healthcare professionals, providing open access to clinical news, information, research, and education for a better understanding of evidence-based pain-management practices.
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            RESOURCES & OPPORTUNITIES
            Lawful Prescribing & Prevention of Diversion: A Balanced Approach to Controlled Substances
            A monograph that discusses the importance for physicians to know when opioids might be useful, know how to prescribe them safely and understand the regulatory structure that surrounds the controlled substances that are being prescribed.

            The Assessment of Pain in Older People
            This concise, 17-page guideline was developed in conjunction with the Royal College of Physicians, the British Pain Society, and the British Geriatrics Society. They reviewed current evidence in the literature to produce sound guidance for all practitioners in assessing the presence of pain in the elderly. Numerous pain rating scales and other tools especially applicable to this population of patients are provided.

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            UPCOMING EVENTS

            February 20-21, 2008
            ELNEC Super Core Course
            American Association of Nursing & City of Hope
            Newport Beach, CA

            February 27-29, 2008
            Initiative for Pediatric Palliative Care Regional Education Retreat
            Children's Hospice and Palliative Care Coalition & Southern California Pediatric Palliative Care Network
            Lake Arrowhead, CA

            March 7-9, 2008
            Miami Headache Symposium
            Miami, FL

            March 15, 2008
            Emerging Issues in the Art and Science of Pain & Symptom Management
            Department of Pain Medicine and Palliative Care, Beth Israel Medical Center
            New York, NY

            April 3-6, 2008
            Intercultural Cancer Council 11th Biennial Symposium on
            Minorities, the Medically Underserved and Cancer
            Washington, DC

            May 7-9, 2008
            Association of Oncology Social Work Annual Conference
            Louisville, KY

            May 13-18, 2008
            Applied Psychophysiology and Biofeedback Conference
            Daytona Beach, FL

            May 2-June 20, 2008 (Fridays only)
            Mindfulness-Based Stress Reduction Program for Chronic Pain
            Silver Spring, MD

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            VOICES OF PEOPLE WITH PAIN
            Barbara's Story: I AM . . . Chronic Pelvic Pain

            I am the mask of the chronic pelvic pain patient. I have the smile that never quite reaches my eyes. I am the quiet weeping that you hear in the early morning hours out your bedroom window. I am the lady in the car next to you wiping tears rolling down her face with a balled up tissue. I am the patient in your E.R. that hears your nurse quietly tell you that there's another "seeker" in bed two. I am the employee that you bullied and picked on because of time missed going to the doctor that was unacceptable to you even as the pain took over my life. Read more...

            PainAid Online Support

            Join our vibrant community and share discussion and your personal stories with others affected by pain. Here you will find: Conference Rooms (regularly scheduled chats on a range of issues); Discussion Boards (threaded message boards on a broad range of topics); and Ask the Expert feature (pose questions to licensed healthcare professionals). PainAid is staffed by highly qualified volunteers with a range of backgrounds, all of whom either live with chronic pain or care for people who do. Visit PainAid!

            Be sure to check out the VOICES section of our website!  New personal stories are added weekly!
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            Thank you to our medical/science editor, Peter J. Vicente Ph.D., ABPP.
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            Share with us how you'd like to get involved and ways you might be able to contribute your voice and skills to our joint efforts by completing our online Advocacy Survey. We welcome your participation and look forward to working with you!

            The American Pain Foundation is an independent, nonprofit organization that relies upon private donations to fund its programs, services, and distribution of educational materials. There are millions of people who live with unrelieved chronic pain. If you can help, please make a donation to the American Pain Foundation. For other ways you can support APF's work, please visit our website at www.painfoundation.org .

            To make sure you continue to receive our newsletters and alerts, please add editor@painfoundation.org to your address book or approved sender list.

         
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