#69~ Reactions to UK Dr admitting that "ME is REAL"

 PERMISSION TO FORWARD, USE IN NEWSLETTERS AND RE POST ON FACEBOOK PAGES

06/08/10

Re: By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010 #1

As a sufferer of severe ME (unable to sit up in a wheelchair since a viral infection 14 years ago), I would like to applaud Dr Scurr for his courageous and honest article admitting that, after attending the Fifth World Conference into ME/CFS, he realizes he had been wrong to attribute ME to psychological or behavioural causes (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010). 

I hope and pray that his medical colleagues will have the courage to follow his example!

Yours sincerely
Veronica Jones
Coleford
Glos

06/08/10

Re: By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010 #2

There is no doubt about the warmth of the reception that Dr Martin Scurr will receive from people who have suffered with M.E. (Myalgic Encephalomyelitis) for years, together with the disbelief and derision that accompanies it, now he has had the guts to admit he was wrong to believe that it does not exist (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010). It will be instructive to see what is the public response he receives from his fellow professionals, who still put M.E. patients through the same mill and whether he has a cold shoulder to deal with behind the scenes.

We know, from private correspondence, which begs for confidentiality and anonymity, that there are many more doctors and nurses out there who think the same and also that many of them suffer in silence with M.E. themselves but prefer not to defy the authority of the Medical Profession in such august bodies as the Royal Colleges and NICE (National Institute for Health and Clinical Excellence), who dictate the terms to GPs, for fear of the same sort of treatment meted out to patients.

If you journalists still don't believe it, you're going to have to go under cover to get the real truth for yourselves.

It shouldn't be necessary for doctors to have to confess they were wrong, if they were prepared, from the start, to admit that they just don't know what M.E. is but are willing to find out. The people best placed to teach them are the patients themselves, if they will only listen.

And look what happens when they do: Dr Scurr now understands that post exertional malaise is a cardinal symptom that separates M.E. from the TATT (Tired all the time) brigade. He should also know that a kind of dizziness, called Orthostatic Intolerance is key. There is still a way to go: M.E. is not fatigue. It's extraordinary that people, who admit that the experience of M.E. is not the same at all, continue to use the same name. If you know someone who has clinical depression, you know that you should not be using the same word for M.E. It's perhaps on a bigger scale than trying to say that a bad cold is flu.

This isn't mere pedantry or fussiness over language. Continuing to regard M.E. in these ways is seriously impeding progress towards find a cure for all illnesses in the Chronic Fatigue Syndrome bundle. I hope that Dr Scurr has opened a can of big fat juicy worms.

Our friends at Invest in ME deserve a big pat on the back for repeatedly providing the annual conference venue that formed the basis of one honest doctor's conversion. Thank you.

Yours sincerely
Dr John H Greensmith
ME Free For All.org

06/08/10

Re: By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010 #3

Dear Dr Scurr,

Thank you for admitting publicly that you were wrong to have incorrectly placed blame for the cause of ME on psychological or behavioural causes (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010).

That you have had your view changed is down to the fact that others within your profession were always convinced that the blame was viral in origin. They stood by that view and looked for supporting evidence even though it would have been far easier for them to have gone down the
psychological/behavioural route. 

Sufferers such as I, who have had the condition since 1988 - aged twenty three - following Glandular Fever, have had to cling to hope that one day biomedical research will be able to finally fully exonerate us.

It is often only that hope which has got many of us through the years of disbelief and the dreadful symptoms that we experience on a daily basis living with ME. I don't think we are fully there yet despite the haze being partly lifted but what I do hope is that you will further help to support those experts that have helped to convince you, as there are also people within your profession claiming expertise over this condition but have far more of an influencing input, yet despite the evidence you cite, still remain totally convinced that ME is a psychological/behavioural disorder.

Your Sincerely
Ian McLachlan
by e-mail

#68~ UK-ME Association’s FB ‘Watergate" Poli-Psycho Fiasco

Does the ME Association’s Facebook ‘Watergate’ herald the end of the ME Association as a “campaigning charity”?

A short investigative report by Ciaran Farrell.

The recent situation on ME Association Facebook has been alarming and perplexing. We have seen members of the ME community thrown off that site without warning or any explanation, when the people summarily removed have not broken any of the rules of ME Association Facebook.

There was a profound shift in both the policy and practice of the MEA in relation to its Facebook. The MEA did not seek to construct proper or adequate rules for their Facebook. Instead, the main Admin of the site took high handed and presumptive action against members of the ME community by removing not only single posts but also entire threads without explanation, or if an explanation were given, it was not in accordance with the stated rules of MEA Facebook.

Those who were removed from MEA Facebook were merely ME activists who were simply expressing their views as would be expected in a tolerant and democratically run charity. Expression of views is to be expected in the public forums of any “campaigning charity” of the kind that the MEA prides itself as being.

Why then did the MEA change from being a campaigning charity into one in which “activism” was perceived to be a dirty word, and those found guilty of “activism” by the MEA on their Facebook summarily punished for the “sin” of engaging in “activism” by being excommunicated from MEA Facebook as a matter of policy?

Some, but by no means all, of the discussions where entire threads were removed centred on discussions of various psychological topics in which the MEA’s ‘Psychological Advisor’ Ellen Goudsmit was a major contributor. She put up a number of postings which either breached or were on the verge of breaching the rules of MEA Facebook, and then erratically removed a number of them.

On one occasion Ellen Goudsmit became so apparently stressed out by the scrutiny that she and the MEA were under that she became in her own words, “confused”, and appeared to be unable to cope with the situation, and proceeded to report MEA Facebook to Facebook Abuse.

In any event, this would have increased the level of scrutiny that MEA Facebook was under.

Due to the inflammatory and controversial nature of some of Ellen Goudsmit’s posts, she deleted a number of them, thus ruining the integrity of the threads, making it impossible for MEA Facebook readers and contributors to follow them. That in turn enabled MEA Facebook Admin to remove the entire threads on the grounds of the loss of thread integrity. Contributors to the removed threads were confounded by the disappearance of their posts.

The loss of entire threads meant that certain matters under discussion could no longer be seen or read by MEA Facebook users, and so left a great deal of unfinished business hanging in the air as questions went either unanswered or were addressed in a confused, confusing and contradictory way.

This matter was made very much worse since Ms. Goudsmit refused to answer questions about her official position of responsibility as the MEA’s ‘Psychological Advisor’ and the duties and responsibilities of her position within the MEA, whilst at the same time being apparently rather “confused” about the very psychological matters that she had been appointed by the MEA to advise them about.

It is a matter of common knowledge in some quarters of the ME community that Charles Shepherd, the MEA’s “Medical Advisor”, wanted the MEA to appoint Ms. Goudsmit to accompany him as some sort of additional medical or psychological advisor to the MEA, as they had both shared the same view about trying to change the name of Myalgic Encephalomyelitis (which is the official World Health Organisation, WHO, nomenclature for ME) to Myalgic Encephalopathy. Myalgic Encephalopathy is not recognised as a disease or as a disease name by the WHO, and consequently is not an acceptable medical or scientific term.

However, it was frequently not clear what Ms. Goudsmit’s role was on the MEA Facebook, or in what capacity she was responding to MEA Facebook users.

This led to a situation where the MEA were placed in the embarrassing position of having to on the one hand explain away these problems to their Facebook users, and on the other hand moderate Ms. Goudsmit’s Facebook behavior.

It would appear that the MEA simply were not prepared to address the problems outlined, or prepared to moderate Ms Goudsmit’s behavior on MEA Facebook, and therefore they sought an alternative means of dealing with a drama that was fast becoming a crisis.

I can now reveal that I have a certain amount of inside information about this situation.

According to a centrally placed key source within the MEA, who I shall refer to as “Deep Throat”, the MEA Facebook Admin was acting under orders from MEA Trustees. ‘Deep Throat’ was the code name of the secret source that made himself known to the two journalists, Carl Bernstein & Bob Woodward, during their investigation of the Watergate scandal.

It has been known that some MEA Trustees such as the MEA’s Chair Neil Riley, has had a presence on MEA Facebook. Mr. Riley was ‘outed’, as using a pseudonym on the MEA Facebook by other MEA Facebook users (despite his denials). It is less certain whom the other Trustees whom “Deep Throat” referred to, may be.

I had a chance meeting with Deep Throat the other day and he told me that the MEA Trustees, the Chair in particular, had taken a keen interest in what had been happening on MEA Facebook. Apparently, they had decided that MEA Facebook was simply not an MEA priority, and that certain people, including myself, had been removed from MEA Facebook because the Trustees simply did not want us there, and NOT because I or anyone else who had been removed had actually broken any rules or had behaved badly.

So it was political. The MEA Facebook Admin was simply following orders and could not, and ought not, to be held responsible for the decisions taken by the Trustees. Deep Throat informed me that if anybody wanted to complain about the removal of members from MEA Facebook and other moderation issues, they ought to write to the Trustees about the matter, and he made the comment that “much good it will do them”.

This was very much in accordance with my own theory on the matter; that the MEA had sought to preserve its relationship with its Psychological Advisor at the expense of being a campaigning charity and acting in an open, honest, transparent and responsible way towards the MEA’s Facebook users who had raised concerns on MEA Facebook about the MEA and/or the behaviour of its Psychological Advisor.

The decision that the MEA have apparently taken, according to Deep Throat, is to run down their Facebook through removing anyone and everyone who asks awkward questions or who posts anything but the most banal material. That decision was apparently taken on the grounds that administering MEA Facebook was taking up far too much time, and since staff time is money, it was becoming far too costly.

The idea, I gather, is for the MEA to turn their Facebook discussion forum into an extension of their Website which simply provides information without any form of discussion.

This would allow the MEA to place ‘safe’ information items on their Facebook site instead of on their Website on a daily basis, and to only “look in on” or ‘prune’ postings on their Facebook site once every 4 to 5 weeks. According to Deep Throat, that is the level of human resource the MEA are prepared to allocate to their Facebook discussion site.

It was not clear from my discussion with Deep Throat whether or not it was the MEA’s longer term strategy to simply run their Facebook site into the ground, and then close it, but I very much suspect it is, as the specified level of Admin time is unrealistically low for the Facebook site with nearly 900 members.

This whole incident raises several key issues :-

Firstly, the lack of willingness on the part of the MEA to set up clear rules for their Facebook site and consequently their failure to learn lessons from a previous Yahoo Discussion Group, MessageUK, in which the MEA was involved together with Action for ME, and which ended in chaos and failure.

Secondly, that the MEA have failed to act in an open, honest and transparent way. The MEA’s Trustees made their decisions in secret and manipulated matters from behind the scenes, rather than engaging in a full and proper consultation over the problems in order to review the situation on MEA Facebook as I and other MEA Facebook users were urging them to do.

Therefore instead of administering MEA Facebook through a democratically arrived at set of rules and polices, which would be published so everyone would know and understand how MEA Facebook would operate, the MEA Trustees simply sought to preserve their own vested interests by preserving their relationship with their newly appointed ‘Psychological Advisor’.

They consequently decided to re-order their priorities accordingly, so that MEA Facebook users membership was deemed to be expendable in order to force a change in culture on MEA Facebook. If this alone would be insufficient to bring about the required cultural shift, then MEA Facebook would also be expendable.

Thirdly, that in instigating their new Facebook culture that puts anyone who raises issues or asks awkward questions at risk of having their posts removed; in addition the possibility of entire discussion threads being removed without warning; and also putting members at risk of having their membership of MEA Facebook terminated without warning or reason - the MEA have effectively prevented the discussion of ME campaigning issues and the discussion of ME campaigning by activists.

The result of this has been to divorce the MEA from a grassroots discussion of ME campaigning and activism. That has taken place to the extent that MEA Facebook is now hardly used by members of the ME community, either for activism or for mutual support between members of the ME community, due to the climate of censorship, apprehension and distrust that has developed on MEA Facebook.

Therefore the MEA have become even more remote from the grassroots views of the ME community in general, and from ME activism / campaigning in particular. That development regrettably makes the MEA less representative of the views of the ME community, whose voices the MEA claim to represent, but from whom the MEA are becoming progressively more removed by the MEA’s refusal to hear or take the concerns of the ME community seriously.

In view of this, and in view of the decisions taken by the MEA Trustees, have the Trustees effectively set a course for the MEA to follow which is to abandon ME campaigning. If so, how can the MEA justify calling itself a “campaigning charity”?

End.

#67~ Summer OI Tips + Impaired Cardiac Response upon Standing in CFS

In Eastern Medicine it is well known that Summer Time is the time for heart attacks... 
so PLEASE be Gentle with yourselves and follow the Summer Guidelines for 
PWCs that have OI, OK? 
We want to keep you HERE ♥ Happy and smiling ;)


BE SURE if you are in the Northern Hemisphere to 
follow the Normal Summer Regime to help prevent OI
by following some simple Guidelines.

There have been 2 kinds of OI associated with ME/CFS, NMH and POTS.

NMH causes a sudden drop of your "systolic BP" upon standing up...
and even  shows up maybe 5 min later.

POTS/ Postural Orthostatic Tachycardic Syndrome additionally 
causes an increased rapid heartbeat/pulse

cuz your heart is having to work SO much harder to get the 
blood circulating possibly due to low blood volume.

BP name tip reminder: there are 2 numbers 
that comprise your blood pressure as in 120/70. 

The last number is the Diasotlic 
(I remember D=Down/last) 

The First or Top number is the Systolic number.

Many folks even keep a portable BP cuff handy at home 
so they can check their BP on a regular basis

and 
NOT just at the Dr office. 
They have arm and wrist cuffs that are available at amazon.com online

if you can't get out to your local drug store..
Online is a good place to go to ready the brands available 
and compare the prices and read the comments by folks 
that have tried them before.. ;)

As always there are many more "detailed" articles you can read
about these subjects and if these simple rules do NOT handle 
your case of OI or POTS than PLEASE check with your Dr always 
to get proper medical advise to make sure you don't have 
other issues or meds that are interfering with things.


*drinking your 64 oz of water daily. I keep 2 bottles handy that total my daily needs so I don't have to "count glasses."..when my bottles are empty than I know I have had my proper amount for the day.

*if you do not have Hypertension aka High Blood Pressure, then adding Salt to your diet to increase your total blood volume can help maintain a more normal blood pressure if you have OI. This helps keeps your blood circulating better, taxes your heart less and helps get more oxygen to your brain to prevent the OI symptoms..with that said.. NEVER ASSUME and 

always check with your Dr.

I add 2 packets of EmerGenC to my water and salt mixture so I also am getting my electrolytes when I drink my water. I keep one bottle of this mixture handy and then have my additional plain water bottles available also. My salt/EmerGenC bottle lasts about 2 days... and the flavored EmerGenC neutralizes the 

salt taste depending on what flavor you choose ;) 

*Make sure to stay as cool as possible and NOT get over heated.

*When sitting put your legs UP and when lying down prop your head up.

*When standing keep moving, even a little, so you help improve your circulation and avoid blood pooling.

Keep something close by to help you keep your balance if needed..either a wall, a cane or walker, or even a convertible cane with a seat built-in. 
 

*If you tend to get water retention and swollen ankles or legs try wearing some compression socks that can be easily purchased in many places unless you need the HEAVY DUTY compression ones that your Dr can prescribe.

***Hope these tips help you have a Safer more

Enjoyable Summer***

RIP- Dennis Hopper  (May 17, 1936 – May 29, 2010)

Steppenwolf - Born to be wild 1969

                              (Soundtrack of the road film 'Easy Rider')

Thought this was worth sharing.. as many of us have or will have this issue
~ Shared from Co-cure♥

Impaired Cardiovascular Response upon Standing in CFS

[This is probably not the easiest discussion section to fully understand, especially without the tables, graphs, etc. but hopefully many can get the gist of it or some of it.  Check out the extract at least.  It says at the end, "funding was provided by the Medical Research Council, ME Research UK, Irish ME Trust, John Richardson Research Group and CFS ⁄ME Northern Clinical Network", but the (UK) ME Association is also funding important research by Dr. Newton in this area. Tom]


Extract:


" We would therefore suggest that there are a group of patients with CFS who have an underlying cardiac abnormality and it is only on performing
appropriate examination that these high-risk patients will be identified, and understanding of the physiological mechanisms that lead to the abnormality explored. It is unclear what the long-term impact of the cardiac abnormalities will have for those with CFS. However, our findings of reduced survival in those with the fatigue-associated chronic disease and primary biliary cirrhosis [31] and studies confirming a
comparable fatigue phenotype between primary biliary cirrhosis and CFS [32] would point to an (as yet) unidentified  risk for those with CFS, and our findings of cardiac dysfunction in a proportion of patients may suggest the group at increased risk."


31 Jones DEJ, Bhala N, Burt JA, Goldblatt J, Newton JL. Four year follow up of fatigue in a geographically defined primary biliary cirrhosis patient cohort. Gut 2006;55:536–41.


32 Jones DEJ, Gray JC, Newton JL. Perceived fatigue is comparable between difference disease groups. QJM 2009;102:617–24.


-----------------
Discussion


We have demonstrated that the skeletal muscle bioenergetic abnormality recently described in patients with CFS [1] associates with a similar cardiac bioenergetic abnormality. This impairment is associated with an increase in cardiac contractility on standing (i.e. the heart has to work harder for the same
degree of physiological stress), the severity of which associates with symptoms on standing in those with CFS.


Our study provides a significant way to defining a bioenergetic phenotype in those with CFS, which appears to be systemic and associates with the symptoms on standing frequently described by those with CFS. The finding of varying degrees of muscle abnormality may account for the contradictory results
in the previous CFS muscle literature [25–29] and underlines the need for a whole organ systematic approach to studies in CFS. Clearly, from this data, the cardiac status of the CFS population recruited for a given study will matter. If our CFS patients are considered as a single group, then oxidative muscle
metabolism is not significantly impaired compared with controls, as we had previously reported [1], and this would not change by recruiting greater numbers: division by cardiac status, however, suggests the presence of subgroups within the population, one of which has impaired oxidative muscle metabolism.
Within the observation that the maximal oxidative function is impaired, it is not possible to determine from these MRS experiments whether this is due to primary mitochondrial defects or alterations in muscle blood flow. Given the relationship between autonomic parameters and cardiac metabolism, the latter may well be true: further large studies are required to
confirm the true prevalence of this bioenergetic phenotype in CFS with subsequent interventional studies to explore this relationship.

We had previously reported abnormalities in proton efflux in the CFS group as a whole [1] while end-exercise and minimum pH were not significantly different. Stratification by cardiac energetics helps us to explore this further and suggest that the impaired cardiac energetic group are weaker and less able to
access anaerobic pathways, therefore producing less acid during exercise and having smaller proton effluxes post-exercise.


Considering the high prevalence of orthostatic symptoms in CFS [2], it was no surprise to find strong correlations between cardiac bioenergetics and cardiovascular responses to standing. The relationship between cardiac contractility on standing and
symptoms was an important finding as it suggests that symptoms in those with CFS are potentially modifiable by treatment of the underlying cardiac abnormality. These abnormalities were CFS-specific, as there were no such correlations in the control population.


At this stage, we have not proven causation, and it is difficult to determine whether the impaired cardiac bioenergetics in CFS ⁄ME represent 'cause' or 'effect'. Two mechanisms are possible.
First, those with CFS have an intrinsic cardiac abnormality [30] that leads to impaired functional cardiac impairment, subsequent hypotension and reduced organ perfusion, all of which manifests as the characteristic symptoms of CFS. Alternatively,
afterload abnormalities involving impaired vascular
response to orthostatic pooling may lead to a secondary cardiac dysfunction. Our findings of a relationship between total peripheral resistance and cardiac bioenergetics would support this alternative hypothesis, but further work is needed to elucidate
each of these mechanisms completely.


When we considered cardiac energy metabolism in the
whole CFS patient group, this appeared to be mixed, with many individuals falling in the normal range with some individuals showing impairment. This suggests that within the symptom complex of CFS, there is a group of patients in whom an actual cardiac abnormality is present (defined by the presence of PCr ⁄ATP ratio < 1.6 [17]). The heterogeneity of patients included in CFS studies is well recognized, however,
despite the usage of specific diagnostic criteria for inclusion, and we could not symptomatically differentiate between the normal and impaired cardiac energetic group. This underlines how important it is to correctly characterize patients with CFS and to study the underlying physiological parameter rather than the symptom complex. We would therefore suggest that there are a group of patients with CFS who have an underlying cardiac abnormality and it is only on performing appropriate examination that these high-risk patients will be identified, and understanding of the physiological mechanisms that lead to the abnormality explored. It is unclear what the long-term impact of the cardiac abnormalities will have for those with CFS. However, our findings of reduced survival in those with the fatigue-associated chronic disease
and primary biliary cirrhosis [31] and studies confirming a comparable fatigue phenotype between primary biliary cirrhosis and CFS [32] would point to an (as yet) unidentified risk for those with CFS, and our findings of cardiac dysfunction in a proportion of patients may suggest the group at increased risk.


This study has examined the tolerability and diagnostic
potential of assessment protocols that examine haemodynamic responses to immediate and prolonged standing in CFS and, for the first time, examines the relationship between measures of cardiovascular function, cardiac energetics at rest and muscle
energetics under exercise in CFS patients. HUT is one of the assessment modalities of choice in the evaluation of those with unexplained syncope, and is recommended in national and international guidelines [33–35]. In contrast, the UK NICE CFS guidelines [36] actively discourage the assessment by HUT.

This is surprising considering the apparent pathophysiological overlap between neurally mediated hypotension and CFS [37,38,39]. Our study confirms a comparatively high diagnostic rate in CFS particularly in those with a history of syncope. We would recommend therefore that referral for cardiovascular
testing, including HUT testing, is encouraged in those where symptoms on standing are predominant, and particularly where there is a history of syncope or presyncope. Importantly, our positivity rate in our control group was similar to previous controls [40].


This study has some limitations. The study group could
clearly be considered to be self-selected, and as a result biased, as they were recruited via the local patient support group. However, all participants had been seen within a local CFS service within 2 years and been diagnosed with the formal Fukuda criteria. A further limitation is that this study cannot establish a
direction of causality for the associations seen in cardiac metabolism, skeletal muscle metabolism and autonomic function. The findings are, however, consistent with a model in which a cardiovascular impairment might lead to impaired oxidative function, perhaps through impaired venous run-off post-exercise.

Our future work will involve assessing groups of newly diagnosed CFS patients to determine their cardiac and muscle phenotypes and following them through time. In addition, largescale bioenergetic phenotyping of cohorts of patients with CFS are required with a view to understanding those biomarkers that are unique to CFS, which will subsequently allow the development of investigative treatment algorithms specific to this disease.


Sources of funding
Funding was provided by the Medical Research Council, ME Research UK, Irish ME Trust, John Richardson Research Group and CFS ⁄ME Northern Clinical Network.


Author contributions
None of the funders contributed to the design, performance or interpretation of the results of this study.
---------------
'Impaired cardiovascular response to standing in Chronic Fatigue Syndrome' Hollingsworth KG, Jones DE, Taylor R, Blamire AM, Newton JL. Eur J Clin Invest. 2010 May 20. [Epub ahead of print]


Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK.


http://www.ncbi.nlm.nih.gov/pubmed/20497461


[TK: I've spaced this out a little]


Abstract


Background:
Impaired skeletal muscle metabolism is recognized in chronic fatigue syndrome (CFS).


This study examined the relationship between skeletal and cardiac muscle function and symptoms on standing in CFS using magnetic resonance spectroscopy (MRS) and impedance cardiography.


Materials and methods:
Phosphocreatine (PCr)/adenosine triphosphate (ATP) ratio by cardiac MRS, PCr/ADP and proton efflux by muscle MRS were performed in 12 CFS (Fukuda) and 8 controls.


Head up tilt (HUT) and cardiac contractility (left ventricular work index, LVWI) (n = 64 CFS and matched controls) were found.


Fatigue impact was accessed by Fatigue Impact Scale and orthostatic symptoms by Orthostatic Grading Scale (OGS).


Results:
Cardiac PCr/ATP correlated with measures of muscle bioenergetic function (half-time PCr recovery [kappa = -0.71, P = 0.005] and half-time ADP recovery [kappa = -0.60, P = 0.02]) suggesting that the muscle and cardiac bioenergetic function correlate in CFS.


Four of 12 (33.3%) CFS patients had PCr/ATP values consistent with significant cardiac impairment.


Those with impaired cardiac energy metabolism had significantly reduced maximal and initial proton efflux rates (P < 0.05).


Cardiac PCr/ATP ratio correlated with myocardial contractility (LVWI) in response to standing (P = 0.03).


On HUT, LVWI on standing was significantly higher in CFS (P = 0.05) with symptoms on standing (OGS) occurring in 61/64 (95%) (vs. 25/64 [39%] controls; P < 0.0001).


OGS scores were significantly higher in those with abnormal LVWI responses to standing (P = 0.04), with the LVWI on standing correlating with OGS scores (r(2) = 0.1; P = 0.03). HUT was positive in 19 (32%).


Conclusions:
Skeletal muscle and cardiac bioenergetic abnormalities associate in CFS.


Cardiac bioenergetic metabolism associates with increase in cardiac contractility on standing.


Haemodynamic assessment in CFS is well tolerated and safe with a high diagnostic yield comparable with unexplained syncope.


PMID: 20497461 [PubMed - as supplied by publisher]

#66~ PR Results of Awareness WEEK-Worldwide so far.

OK, this article might seem a bit DRY, and granted I am in a not very pleasant mood
because the ONE organization that is "supposed to" BE "OUR VOICE" in the USA and HELP "THE PUBLIC HEAR" US... That's what Grassroots Campaigns DO... 
No one has Heard ONE Peep from them, not seen one PSA on any cable or
satellite radio station they sponsored, haven't heard one Spokesperson they 
have attracted to Represent us to speak for us TO 
THE PUBIC., NO handout brochures passed out to Dr's.

So using a British term... I'm bloody well ticked off...because the 
PR TEAM for the USA was ABSOLUTELY   "AWOL"... AND SINCE THERE IS ONLY
ONE National Group that claims that Title.. You can guess whom I mean.


So I have a funny feeling that the Grassroots Volcano is about to ERUPT......


Here is ALL I have been able to gleen with the help from MANY friends from around the WORLD to help me take note of ANY "Awareness WEEK PR articles"....
So here goes.... I have tried to divide it up- by Country or Continent 
when I wasn't sure...Hope it makes some sort of sense to you....


*****************************


PUBLISHED Results of Awareness Day/Week PR around the world.

Kansas,USA~ Well, the newspaper in my town had an article about a lady in town with LYME disease, but no mention of ME/CSF/FM.

Utah, USA~ Nothing that I know of in Utah. It gets frustrating...and I know my doctor and others have tried to get the media involved.

Nevada, USA~
Got signed proclamations from both the Nevada Governor, and the local Mayors in Reno, NV, and Sparks, NV, that May 12th is now recognized as ME/CFS/FM day!

Michigan, USA~
Sent out a Press Release to over 20 different places: TV, radio and print media....not a peep :(

California, USA~
I Sent out emails to many TV stations = nada

*******************************************************
Ireland, U.K.~ RTE...Irish TV station...
interviewed an M.E. sufferer.
It was pretty well done but not long enough.

Northern Ireland~ The Down Recorder, Downpatrick, Co. Down, N.Ireland are doing an article every week for the next three weeks...written by Mary Cardwell. I got it today and they have inserted an informative introduction to the article and stated that it will start next week.

*********************************************
England, U.K.~
Solicitor rides from Hampshire to Edinburgh for CFS Research Foundation
http://www.thisishampshire.net/news/8119155.Man_s_marathon_bike_ride_in_brother_s_memory/http://

VPO Press Release-
Statement on Behalf of Dr Sarah Myhill Concerning GMC Hearing of 29 April
http://www.virtualpressoffice.com/publicsiteContentFileAccess?fileContentId=289920&fromOtherPageToDisableHistory=Y&menuName=News&sId=&sInfo=

IlfordRecorder24
Hainault mum rebuilds life as she battles M.E.
www.ilfordrecorder.co.uk/content/redbridge/recorder/news/story.aspxbrand=RECOnline&category=newsIlford&tBrand=northlondon24&tCategory=newsilford&itemid=WeED14%20May%202010%2015:38:51:530

Gazette~
Mother and daughter from Thornbury speak about the effects of ME
http://www.gazetteseries.co.uk/news/8130415.Mother_and_daughter_speak_about_the_effects_of_ME/

Toronto Star~
A host of other chronic disorders often accompanies fibromyalgia
http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808949--a-host-of-other-chronic-disorders-often-accompanies-fibromyalgia
The Daily Record
ME sufferers battle to raise profile of condition during National Awareness Week -
http://www.dailyrecord.co.uk/news/2010/05/10/me-sufferers-battle-to-raise-profile-of-condition-during-national-awareness-week-86908-22247881/
The Guardian
The Trouble with M.E.
http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome

BBC Radio 2: Jeremy Vine Show
http://www.divshare.com/download/11342188-0d6 
Interviewed kay gilderdale, local radio in newcastle. Interviewed an ME sufferer and I did a tv news interview for central news. ( though still waiting for them to air it, ME association also involved in that interview ).
DailyMail~ RIP Sophia Mirza.
Two policeman broke down her door so she could be sectioned by a psychiatrist, a doctor and a social worker. She died aged 32, the first person in the UK to have ME recorded as a cause of death.
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html

~ UK
GMTV~ http://www.gm.tv/lifestyle/health/48865-me-awareness-week.html


************************************************************
New Zealand, East Coast~ none here sorry and I'm in New Zealand, on the East Coast, in Hawkes Bay, Napier

New Zealand, Dunedin~ I spoke on radio pacific for NZ plus radio toreoa in Dunedin. Most support groups here in NZ are putting article in the newspapers. I have put one in the Dunedin area and know of most others doing the same. We are also doing displays in the hospital for next week plus have a display in the warehouse which we will be having people there all day.
***************************************************************
Netherlands~ Heard or saw nothing in the Netherlands :-((
BTW, I've send letters to the media as well - not a peep.
But......I'm sure somewhere this year it's going to be front page news!

****************************************************************
Australia~
http://www.metaversejournal.com/2010/05/10/mecfs-awareness-art-exhibition/

Australia~ I haven't heard a zip..had a letter from our local state society letting us know that had stuff that they could post out if we were planning a stall ....sadly it came half way throught the week .......a bit late .......

******************************************************************
Canada:

Toronto's awareness day event at the Ontario Legislature has made the news!
http://www.montrealgazette.com/health/Chronic+illness+group+voices+call+national+diagnostic+clinic/3019292/story.html

(same story published in Vancouver, B.C.)
http://www.vancouversun.com/health/Chronic+illness+group+voices+call+national+diagnostic+clinic/3023364/story.html

BC News
http://www.bclocalnews.com/okanagan_similkameen/vernonmorningstar/lifestyles/93470524.html

Morrisburg, Ontario
http://www.morrisburgleader.net/story/international-mecfs-and-fm-awareness-day-may-12

Peterborough
myKawartha.com
A love story rewarded
http://www.mykawartha.com/community/article/813563--a-love-story-rewarded


*************************************************************************
The ‘fibromyalgia wars’ rage on May 13, 2010

Quote:
While there’s finally agreement on what to call it, not everyone in the 21st century agrees that it exists as a “real” illness, focusing instead on the psychosocial aspect of it. Naysayers, writing in the Journal of Rheumatology, have called FM “the medicalization of misery” and declared that “pain is real, fibromyalgia isn’t.”

University of North Carolina professor and rheumatologist Nortin Handler has called FM “a social construction” and suggests that it’s a case of how “a person with widespread chronic pain … chooses to be a patient with widespread chronic pain.”
http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808945--the-fibromyalgia-wars-rage-on
 
****** May 14, 2010**********
Jamie Fox Show- Satellite Radio about Fibro !!! 

Lynne and Tony on "The Jamie Foxx Show"

Big thanks to Jamie Foxx for talking about fibromyalgia on yesterday’s “The Jamie Foxx Show” on Sirius Satellite Radio, which has over 25 million listeners. The Academy award winning actor, singer and comedian featured special guests Lynne Matallana, President of the National Fibromyalgia Association and Tony Terry, R&B recording artist and new NFA spokesperson. 

Lynne and Tony talked about the importance of raising awareness of fibromyalgia, and the free benefit concert with Tony Terry at today’s Fibromyalgia Awareness Day at Cal State Fullerton. 

Also on the show was Larondra Terry, Tony’s wife, who has fibromyalgia. The Terrys are featured on the cover of the new issue of Fibromyalgia AWARE magazine.
By:National Fibromyalgia Association

Here is a link to Jamie Fox's show from last night.
They start talking about Fibromyalgia at 7:10 into the audio:
 
http://www.youtube.com/watch?v=3XFbG-hG2ok
it continues at this video
http://www.youtube.com/watch?v=2CWX4xQtuRs

**********************************************************
ME/CFS/FM Awareness Blogs + Newsletters~

UK~
http://southdownsliving.blogspot.com/2010/05/me-awareness-week-at-burgess-hill.html

USA~
EmpoweHER
NO/ONOO Cycle May be Cause of CFS, MCS and FM
http://www.empowher.com/news/herarticle/2010/04/26/noonoo-cycle-may-be-cause-cfs-mcs-and-fm

Planet Thrive~Special Guest~Lyme
http://planetthrive.com/2010/05/a-poem-to-kick-off-lyme-disease-awareness-month/
*********************************************************
An Overview of the Latest bio-medical research being done
from the U.K. and IiME
http://www.investinme.org/ResearchCurrentProjects.htm#WPI

This is what we are fighting against. Sectioned by two policeman, a psychiatrist, a doctor and a social worker (all of whom were cleared of wrongdoing), Sophia died aged just 32.
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html#ixzz0o2QNKtoW

The NCI ~CFS/XMRV Connection revealed.
http://ccr.cancer.gov/staff/staff.asp?profileid=5518

June 18th, 2010, Tulane University, Special Conference on XMRV: 
Lessons from studying XMRV and
Infection in Human Blood Products
http://tulane.edu/cid/special.cfm
********************************************

********************************************
ALL of the May 2010 CFSAC- hhs.gov USA meeting are on youtube NOW for your EASY viewing... 
THANKS HEAPS to the TEAM that made this possible!!


http://www.youtube.com/user/CFSACvideos#p/c/131A8EEA7ECD72CD


As Daffy Duck use to say ~ "That's ALL Folks"

#65~ CFSAC + ME/CFS/FM "Awareness DAY" Today !!

  This Wonderful Week actually started off with Mother's Day and many children delivered much love to their mothers in the way of Donations to the Whittemore Peterson Institute to HELP raise money for the URGENTLY Needed research to help everyone in a MORE timely manner... 
Kudos to all of the children and Mothers that came thru and Gave 

what you KNEW was needed and NOT just more things.. you gave 

so that you could have more YEARS with which to LOVE the person in whose name you donated...

Bless you all~ WAY to GO !!!

We are Officially in the middle of AWARENESS WEEK and it is  

TODAY International 2010 ME/CFS/FM Awareness DAY !! 

(including actually ALL Neuro Immune Diseases)

Then on Monday we had the full 1 day CFSAC meeting in Washington DC, was NOT ONLY attended the FIRST TIME EVER by the Asst. to the Sec. of the Dept. of HHS, Dr  Howard K. Koh, but he was actually ON the Agenda for a

"Welcome Statement from the Assistant Secretary for Health"

I want to THANK the person that made these videos available for the World to SEE.

Here is Dr. Wanda Jones PhD., Dr. Howard Koh~HHS,
and the CFSAC members & ex-officio members.
These are all shown here as ONE Segment with the 
"money quotes" in the 3rd part...

My thought in including these here was for those people that were unable to watch the CFSAC meeting LIVE and also for those around the world that would like to get a look at the USA  CFSAC, and this might be a good section to show and SHARE with those you Wish to MAKE AWARE "This WEEK of ME/CFS" this might HELP speak for you....






As you can tell THIS got the Week off with a Grand manner..
not exactly a CURE yet.. but an IMPORTANT STEP for CFS in the USA.

The CFSAC made quite a few recommendations that 
will be going to the HHS for Review and Reply~

They recommend that all people diagnosed with CFS do NOT donate blood~ PERIOD.

They recommend that the HHS Secretary include the education and training of medical providers for CFS in Health Care Reform.

They  categorically "Reject" the attempt to classify CFS as "Psych" in the ICD.

They also made many motions that have to do with their charter, but these I believe were the MOST Important to the patients and public.

Many other videos are already on youtube and many of the written testimonies are available via .pdf download HERE

Some of the Highlight Testimonies I also would like to share with you are as follows :

Annette Whittemore from WPI ~



We received Testimony from Nancy McGrory Richardson, Education and Outreach Director for Hemispherx Biopharma that Makes Ampligen...
explaining the FDA new requests and how they are progressing.



One Patient Testimony I REALLY wanted to bring to you was from
Dr. Mary Schweitzer PhD. Please listen to her points..


Another Testimony I wanted to you hear was from
Dr. Fred Friedberg PhD President of IACFS/ME




The activities and communications are coming FAST and Flurious
and I am adding many MORE "NEW" patient Blogs to this blogroll..for your places to go for commraderie and possible info that might help you. I've also added more to the Herbs/Meds section. I am listing these for INFO only and I am NOT advising you to take anything w/o your Dr's advice.

If you have NOT downloaded a Ribbon anywhere to add to whatever you need it for to HELP Raise Awareness PLEASE feel FREE to download one of the ones I have added at the Top and you can also still add a Twibbon to your avatar by using the Twibbon's shown. We know you by your Ribbons ♥


How many have added a BIG BLUE RIBBON to your 
lamp post or tree out front.
..to Raise Awareness in your neighborhood?

Another member, Diane Martin, from "down-under"
has also created a flyer (above) you MAY download and print and Pass OUT to your friends, Dr's office waiting rooms, any place you thing you can set some..
Thanks Diane ♥♥♥


Many folks that are having Birthdays during this time and month are
asking that everyone instead of giving them Birthday presents to 
Please Donate to  the WPI so more research can be done to HELP us quicker.


Please if you ARE a Mother or have a child donate  in their name
as many Mother and children ARE effected.. Mostly 60% Females.


http://www.wpinstitute.org/help/help_donation.html

The week is getting off to a GREAT start.. let's WRITE DOWN all the Ideas of things we aren't doing NOW so we can organize and DO THEM next year for SURE, OK?

Hope the rest of the week continues as good as the first part and that I have MORE to report back soon...

**GO TEAM GO**

#64~ Letter to the Editor by Dr Judy Mikovits~XMRV+ U.K.

Letter to the Editor

---

Judy A. Mikovits, PhD, Director of Research, Whittemore Peterson Institute, Reno, Nevada

    Since the publication of the Science article in October 2009 concerning Xenotropic murine leukemia-related virus (XMRV) in patients with chronic fatigue syndrome (CFS) (1), there have been three PCR-only papers published that have been unable to detect this agent (2-4). As these papers have generated questions concerning the presence of XMRV in persons with CFS, we wish to document the precise methods used when XMRV was amplified from the patient samples. We would urge researchers not to rely solely on DNA PCR on unactivated PBMCs, and offer our assistance if needed.

Why are reports of negative PCR studies occurring?

    The first possibility is that like HTLV-1, and unlike HIV-1, the worldwide distribution of XMRV is low, particularly in Europe, and that chronic disease such as CFS may have varied environmental triggers in different parts of the world. In our subsequent work since the publication of the Science paper, we have found XMRV in persons from around the world and we think this explanation is unlikely.

    A second possibility is that there is more sequence diversity in XMRV than previously reported. That is, because of strain differences, PCR detection will occur only if the primer sequences employed are correct for that particular strain. However, PCR sequences generally are from conserved regions of the viral genome, so this explanation may also be unlikely.

    The replication rate for XMRV could be very low and/or the levels could fluctuate in a given individual over time. This explanation may apply for individuals, but would be unlikely to apply to large numbers as the three negative studies have used. However, if any of the last three are true, single round PCR of genomic DNA isolated from PBMCs, using primers based on published sequences from using highly specific PCR based on the sequence of a single molecular clone, (VP62) might not result in the amplification of XMRV, even from an infected individual.

    A fourth explanation is that peripheral blood mononuclear cells might not be the main reservoir for the virus. It should be noted that early in HIV infection, PCR of peripheral blood mononuclear cells will not detect the virus, as the reservoir is in macrophages. It is only later that CD4 cells become infected and PCR of peripheral blood becomes positive. From in vitro studies we are aware of tropism of XMRV, however no full investigation of in vivo tropism has been carried out to date. There are other possible explanations for the disparity of results between the Lombardi et al study and the PCR-only studies which are currently being explored.

    However, despite the current assumption that PCR answers all questions, there are serious flaws in this assumption, and PCR-only papers are rarely published without supporting data. For this reason, the Science paper employed several other biologic technologies in asserting that XMRV is an infectious retrovirus, and a human pathogen linked to persons with CFS. It should be noted that the question of XMRV "causing" CFS was never discussed in the Science paper.

    Because of these issues, we will describe below the methods we and other investigators currently use to reproducibly detect XMRV. Because we wish to accurately share technical information, the following will be quite technical, and possibly difficult for clinicians. Again we would like to offer any assistance we might be able to give in discussing these methods.


AMPLIFICATION METHODS FOR XMRV DETECTION:

1) REVERSE TRANSCRIPTION (RT)-[PCR]

    To avoid problems with laboratory DNA contamination, we perform nested PCR with separate reagents in a separate laboratory room designated free of high copy amplicon or plasmid DNA. Negative controls (absence of added cDNA or DNA) were included in every experiment. Two methods are used. TRIzol method is used to extract RNA. PBMC (2-5 million) or plasma (250 μL) are added to 1 mL TRIzol reagent (or 750 uL TRIzol LS reagent) and RNA prepared according to manufacturer’s instructions. The final RNA pellet was suspended in 14 to 30 μL of RNase-free water, and quantified using the Quant-iT RiboGreen RNA (Invitrogen). Reverse transcription (RT) with SuperScript VILO cDNA synthesis kit (Invitrogen), cDNA was made by a mixture of oligo d(T) and random primer with 2.5 μg total RNA. Subsequent optimization of the nested PCR revealed that an increase in starting template leads to a reduction in false negatives. 

    Identification of XMRV gag and env genes was performed by PCR in separate reactions. Reactions were performed as follows: 750 to 1000 ng DNA/cDNA, 2 μL of 25 mM MgCl2, 25 μL of HotStart-IT FideliTaq Master Mix (USB Corporation), 0.75 μL of each of 20 μM forward and reverse primers in reaction volumes of 50 μL. For identification of gag, 419F (5’-ATCAGTTAACCTACCCGAGTCGGAC-3’) and 1154R (5’- GCCGCCTCTTCTTCATTGTTCTC-3’) were forward and reverse primers. For env, 5922F (5’- GCTAATGCTACCTCCCTCCTGG-3’) and 6273R (5’- GGAGCCCACTGAGGAATC AAAACAGG-3’) were used. For both gag and env PCR, 94 °C for 4 min initial denaturation was performed for every reaction followed by 94°C for 30 seconds, 57°C for 30 seconds and 72 °C for 1 minute. 35 cycles was performed followed by final extension at 72°C for 2 min. For second round PCR, annealing was performed at 54°C for 35 cycles. Six μL of each reaction product was loaded onto 2% agarose gels in TBE buffer with 1 kb+ DNA ladder as markers. PCR products were purified using Wizard SV Gel and PCR Clean-Up kit (Promega) and sequenced.

    Alternatively, in the first round of PCR, cDNA is synthesized followed immediately by the first round of PCR amplification using USB Taq polymerase and master mix according to the manufacturer’s instructions, using 0.5 ug RNA as template and the previously described GAG-O-F (F542) and GAG-O-R (R1153) as the sense and antisense primers, respectively (1). The second round of PCR was performed using 5 ul of the reaction mix, the primers GAG-I-F (F603) and GAG-I-R (R1015) using 0.5 ul USB Taq polymerase and Invitrogen PCR buffer, supplemented with an additional 0.5mM MgCl2. The PCR products were then separated on a 1% agarose gel, and the PCR products of the expected size (413 bp) were recovered with a QIAEX II gel extraction kit (Qiagen) and sequenced. Using a similar approach for the amplification of env sequences using previously described primers only resulted in the amplification of a small percentage(gag positive samples.


2-VIRAL AMPLIFICATION BY TRANSMISSION TO LNCaP (Biological amplification)

    Two methods are used to detect virus following transmission to LNCaP cells. The first uses nested PCR: Plasma from 20 mL of anti-coagulant blood is flash frozen and PBMC isolated by ficoll-hypaque density centrifugation. The PBMC are activated for three days RPMI-1640 medium supplemented with 10% fetal calf serum, 2 mM glutamine, 1 mM sodium pyruvate and antibiotics supplemented with PHA (1 μg/mL) and IL-2 (20 units/mL). In 15 mL centrifuge tubes, 5 x 105 detached LNCaP, 1 x 105 activated PBMC free of IL-2 and 50-250 μL of autologous plasma in 250 μL of RPMI complete media are centrifuged for 10 min at 1500 rpm. The entire contents of the cell pellet are cultured in a T-25 flask in complete RPMI 1640 media for 4-5 days until the LNCaP cells are confluent. DNA is then extracted from the cells and nested PCR for gag is performed as previously described. A companion negative normal donor is always run under the same conditions.
  
3-VIRAL ISOLATION

    Cell-free plasma (100-150 μL diluted to 300 μL with serum-free tissue culture media) is added to a six-well culture plate with the LNCaP cell line (30-50% confluent). Negative normal plasma is included in one well in each plate as a control. The plates are centrifuged 5 min at 1500 RPM, rotated 180o to prevent drying out part of the culture and centrifuged again for 5 min. It is important to minimize toxicity in the plate and conditions will vary with type of centrifuge used. Each well is given 3-4 mL of complete RPMI. For cell-cell transmission, 1 x 106 PBMC given PHA but no IL-2 are added to a six-well culture plate with the LNCaP cell line (30-50% confluent) are centrifuged and cultured as above. For PCR determination the cell/plasma samples are culture for 5 days then harvested. For viral isolation, after overnight incubation, the plasma/PBMC is removed and fresh media is added. The cultures are grown until confluent, expanded by transferring to T-75 flask. Productive virus isolation is determined at passage 2 by immuno-blotting or PCR detection and sequencing.

        In sum, we have had success in identifying XMRV with the above methods. We remain confident that XMRV is linked to CFS and further studies are proceeding. We are aware that the research concerning XMRV's role in persons with CFS and other neuro-immune illnesses is in its infancy, and eagerly look forward to emerging knowledge in this field.



1.    Lombardi V, Ruscetti F, Gupta J, Pfost M, Hagen K, Peterson D, et al. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science. 2009;326(5952):595-89.
2.    Erlwein O, Kaye S, McClure M, Weber J, Wills G, Collier D, et al. Failure to detect the novel XMRV in chronic fatigue syndrome. PLoS ONE. 2010;5: e8519. doi:10.1371/journal.pone.0008519.
3.    Groom H, Boucherit V, Makinson K, Randal E, Baptista S, Hagen S, et al. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology. 2010;7(10 [Epub ahead of print]).
4.    Kuppeveld F, de Jong A, Lanke K, Verhaegh G, Melchers W, Swanink C, et al. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. BMJ 2010;340(doi:10.1136/bmj.c1018).
*************************************************
Also for those in the U.K. ♥♥♥

"We are having an independent phlebotomy company draw samples in the UK in the next two weeks if you or others would like to participate send me your addresses and contact info ASAP. Yes we will resume blood draws next week and all 200 participants will be drawn in the next few weeks and all the studies will be done This project is our highest priority! It is going very well and being done efficiently. I hope this addresses your concerns

Best wishes, Judy"'

#63~ Dr.David Bell's Appeal- send $10 to WPI - ASAP

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research

David S. Bell MD, FAAP
Lyndonville, NY 14098

May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville, NY, and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? 
And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.


Thank you.

David S. Bell MD, FAAP


1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.