AABB "actively discourages" CFS blood donation in USA!!!

[omerbasket]

I moved the thread to the Media Section because it was a press release - it looks OK now.

I guess the US is just very conservative - altho not nearly as conservative as the UK (or Germany or Spain or France, etc. )

Didn't the UK decided to ban ME patients from donating?
http://esme-eu.com/home/esme-think-...s-blood-donations-in-europe-article342-6.html

The Canadian, Australian and British governments have all banned ME/CFS patients from donating blood. We, the Think Tank panel of ESME, applaud their actions and believe that a similar ban should be issued in all European countries.

EDIT: Sorry, I see that this has already been disccused upon.

 

[usedtobeperkytina]

Well, my first comment, before I even read the posts is "shucks". I thought for once I would be the first one to post something new. And I look here and there is already three pages.

I bow to your superior information dissemination skills.

Tina

 

[usedtobeperkytina]

Yes, FDA regulates. But, AABB is member association for blood collection agencies. Note- they give accreditation to agencies. So the question will be, if an agency does not follow the AABB recommendation, would they lose their accreditation.

Either way, this is news for us anyways.

Doctor on main street, you might want to become familiar with CFS, you will have lots more people coming in asking about it.

And, just a reminder, remember folks I told you that if there is news to tell but you don't want a lot of attention on it, you release it on Friday afternoon.

It's called "dumping" and it is a common PR strategy.

Tina

 

[VillageLife]

It's taken many months, weeks, days, hours to get to something positive, at least now the chances of people perhaps getting CFS maybe less!

I so want to get well, I so hope this is the start of positive action on solving the mystery of this illness.

 

[V99]

Villagelife - I completely agree with you.

Didn't the UK decided to ban ME patients from donating?

Patients have been banned from at least 1989 in the UK. http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.htm

 

[Cookie Monster]

I guess the US is just very conservative - altho not nearly as conservative as the UK (or Germany or Spain or France, etc. )

Hi Cort,

Am i right in thinking that in most European countries (not sure if we do in the uk too?) they employ the Intercept protection system that was announced fairly recently as being capable of eradicating the threat of transmitting XMRV infection from the blood banks? Im just wondering if maybe thats why they arent rushing to follow suit with public recommendations on this continent?

CM

 

[muffin]

I wonder if...

HHS Jerry Holmberg and the crew at the CDC are soiling their pants right now knowing that this may well fortell what more is to come.

Weasel and Reeves: Get yourself a big box of DEPENDS (Adult diapers) since you are sorely going to need them when the real ball drops. Ditto for Holmberg.
------------------------------------------------------------------------------------------------------
Dr. Holmberg: Advisory Committee on Blood Safety and Availability (ACBSA) is ACBSA@hhs.gov Feel free to cc: Jerry Holmberg, Ph.D., Senior Advisor for Blood Policy and Richard Henry, Deputy Director for Blood Policy and Programs (jerry.holmberg@hhs.gov, richard.henry@hhs.gov)

 

[dannybex]

Hi Cort,

Am i right in thinking that in most European countries (not sure if we do in the uk too?) they employ the Intercept protection system that was announced fairly recently as being capable of eradicating the threat of transmitting XMRV infection from the blood banks? Im just wondering if maybe thats why they arent rushing to follow suit with public recommendations on this continent?

CM

Good question Cookie, especially considering that 'healthy' folks also may have XMRV...so if we're worried about transmission via the blood supply, shouldn't all blood be screened?

 

[V99]

so if we're worried about transmission via the blood supply, shouldn't all blood be screened?

Do they screen for HIV, or do they kill it off? (whatever they call it)

It is also too early to say whether the Intercept protection system works all the time, if you know what I mean. There has only been one study published about this.

 

[VillageLife]

will they be giving the same recommendation to past prostate cancer sufferers to not donate blood?

 

[bullybeef]

The UK’s perspective regarding ME and blood donation is purposely vague. People with ME are deferred from blood donation until they are fully recovered. However, this has never been publicly announced; I didn’t know of this until I looked into it, and this information was has never been mentioned to me by a number of different medical professionals I have been consulted by.

The wording ’fully recovered’ also adds to the misinterpretation that pwme get better, and that there is no way to fully confirm whether someone has ’fully recovered’. I suspect the UK government will feel they have covered all the bases to not see it fit to change their wording on the subject. The last thing they wish to do is offer a statement of admission that ME is a serious disease, that could be caused by a new contagious pathogen.

If xmrv has been swimming freely in the world’s blood supplies for around 50 years, god knows how many people will be infected. And the powers that be must be scared to death of this possibility.

 

[parvofighter]

I don't get it

The CAA's continuing tacit endorsement of failed XMRV studies across the pond
The CAA has done it again in today's CFIDSLink: e-news. In their breathless support for the AABB position "actively discouraging" ME/CFS patients from donating blood, they once again tacitly endorse the failed XMRV studies across the pond. This kind of reckless and sloppy writing coming from an organization that is ostensibly advocating for patients, and "clued in" to high-calibre ME/CFS research, ensures that physicians, policymakers, and research funders around the world will continue to give credence to the sloppy research conducted by the UK and Dutch researchers. And this spells D-E-L-A-Y for patients desperate for answers on XMRV.

http://www.facebook.com/notes/the-c...-commends-aabb-for-todays-action/442217155538
While subsequent studies conducted in Europe have failed to detect XMRV in the blood of CFS patients, efforts to duplicate the findings of the original Science study and to develop reliable assays to detect XMRV are underway at several institutions in the United States and other countries.

Sloppy treatment of lousy science
This kind of sloppy treatment of lousy science ensures that ambiguity will remain around the credibility of those failed studies. How hard is it for our so-called advocacy organization to get this right? An easy correction - that would set the record straight on the non-comparability of the UK and Dutch studies would just require 5 extra words:

While subsequent studies conducted in Europe have failed to detect XMRV in the blood of CFS patients, these were not true replication studies. Efforts to duplicate the findings of the original Science study and to develop reliable assays to detect XMRV are underway...
​

Mindy Kitey gets it: why can't the CAA?
Mindy Kitei, journalist extraordinaire from CFS Central (http://www.cfscentral.com/2010/06/are-you-smarter-than-9th-grader.html) gets it. Are our CAA advocates smarter than 9th graders? Or are they astonishingly stubborn, or so caught up in political butt-kissing that they favor nebulous politically correct wording over scientific clarity. Why can't our so-called advocates have the courage and integrity to stand up for good science - and stamp out the smoke-and-mirrors that are delaying scientific progress on XMRV research?

Mindy clearly gets it. In her very first paragraph on her latest blog, she writes:

In my interviews with Dr. Myra McClure (principal investigator of the first British ME/CFS XMRV study) and Dr. Kate Bishop (principal investigator of the second British ME/CFS XMRV study), both acknowledged that their studies were not replications of Dr. Judy Mikovits's XMRV study. (See their comments in the BLOOD FEUD: Part 2 post.) However, most of the media has mislabeled their studies as replications.
​

In ME/CFS education, sins of omission are as egregious as sins of comission
The CAA is right in there with "most of the media". In the case of ME/CFS education, sins of omission are as egregious as sins of commission. By not taking a stand on the shoddy research across the pond, the CAA implicitly supports it. How hard is it to be precise and ethical? Every. Single. Time?

Someone PLEASE give the CAA a head-shake!
I have asked for the email addresses of Kim and Suzanne to convey my continuing extreme concerns on the sloppiness engendered in their treatment of XMRV research. In the interim, if someone (Jenny? Cort?) can communicate this urgent need for editing this piece to the CAA, please do so. This is a pattern that MUST stop. There is absolutely no excuse for this kind of sloppiness. How much plainer do we need to be? Delay = lives.

If the CAA is listening, why is it still making rookie mistakes? For heaven's sake, clean up your act! You MUST be squeaky clean and crystal clear every single blasted time you talk about the sloppy studies across the pond! Are you, or are you not an advocacy organization?

 

[muffin]

ftdh@cdc.gov, eunger@cdc.gov,
Emailed Dr. Frieden and Dr. Elizabeth Unger (CDC/CFS) with this info. Have to make sure they are up to date on CFIDS!!!

 

[Mithriel]

Parvo, you are so right. Why feel the need to mention these studies anyway. They are irrelevant to the issue of not donating blood. One positive study means there is enough doubt that the blood services should be careful. It is just being used as another opportunity for downgrading the WPI findings.

Either they do it deliberately, or they do it ignorantly. Why can't they learn?

We are pleading with them to help us but they ignore us as much as the psyches do. I bounce between feeling helpless and getting angry.

CAN ANYONE WHO IS WORKING FOR THE GOOD OF THE PATIENTS PLEASE REREAD WHAT THEY WRITE BEFORE THEY SEND IT AWAY TO MAKE SURE NOTHING IN IT CAN BE USED TO MAKE OUR SORRY SITUATION WORSE. THANK YOU.

Mithriel

 

[dannybex]

An easy correction - that would set the record straight on the non-comparability of the UK and Dutch studies would just require 5 extra words:

While subsequent studies conducted in Europe have failed to detect XMRV in the blood of CFS patients, these were not true replication studies. Efforts to duplicate the findings of the original Science study and to develop reliable assays to detect XMRV are underway...
​

Excellent Parvo.

Yes...if they would JUST ADD THOSE FIVE WORDS...certainly that cannot be too difficult to do, and it would change the entire meaning of the sentence. Perhaps Jenny could pass on this request?

 

[V99]

I agree with all of you. They need to say they were not replication studies. It is utterly bizarre that they would not make this clear. What's wrong with the truth?

 

[parvofighter]

Help requested from Jenny & Cort

I haven't heard back from the CAA (it's a weekend, of course), so have PM'd Cort and Jenny to look into this.

Of course, it's more than changing 6 words... it's the underlying larger issue of WHY would the CAA be so careless? Any of us writing this material "get it", that intemperate reporting can D-E-L-A-Y promising research. Or, as Mithriel put it, can directly harm us.

Please folks, listen up!

Parvo

 

[Cort]

his is and that's that usesThere is a belief here that these were sloppy, incompetent researchers and studies but that belief is not shared in the research community. I was just talking to a researcher who has CFS. He thought the Science study was a wonderful study and it well deserved to get into Science and to get the airplay it did. But he did not think that any of the subsequent studies were poorly done. He noted that, yes, they were all validation studies and none of them were determinative with regards to XMRV at all and the issue was still open.

Have we heard Dr. Goff or Dr. Coffin or Dr. Silverman (or anyone other than Dr. Mikovits) saying that these lousy studies? NoAnd we certainly would have heard that if they were. Remember that one of those studies included prominent CFS researchers and virologists (Kerr, Gow). Another was from a prominent CFS researcher currently studying the role of endogenous retroviruses play in CFS (Huber). Another was from a Canadian virologist who has apparently been a passionate advocate for CFS for many years (Joliceur). These are 'friendly studies' from good researchers. They wanted to find the virus. That doesn't even take into account the 'unfriendly' studies. Several of the studies collaborated with the Whittemore Peterson Institute - they used their reagants and samples.

You can't call them lousy science. Nobody is saying they are the endgame either; no one is saying that there aren't holes in them. Its true that none of them cultured the virus (at least as far as we can tell) but its not always necessary to culture a virus to find it. this It just so happens that you may need to do that for this virus. (Or maybe not).

These are all thin slices at XMRV; that's what we should expect - lots of small or medium size studies taking their own different stabs at the virus. None of them are determinative - all have their weaknesses and over time a consensus will grow. Because searching for any new virus is difficult there's no consensus as yet.

For me the CFIDS Association is not being intemperate at all; its we who are being intemperate! The CFIDS Association has nothing to lose and everything to gain from XM RV been found. Do you know how I know that? Because when we were in the thick of the good news about XMRV the donations to my site went up tremendously! (Now they are dying down tremendously ). Finding a cause for CFS strengthens everybody - it strengthens the CFIDS Association, it strengthens the Whittemore Peterson Institute, it even helps me. It attracts money to the field - it gets the patients engaged again - its tremendously exciting.

The CAA has been more cautious than everybody would've liked but they are right in the thick of it; Dr. Vernon (and Dr. Mikovits) are on the DHHS task force, the CAA has been lobbying up on the hill for more XM RV research, they're funding a study on XM RV - one of the few that's trying to replicate the WPI study, they're interacting with the blood community.....

 

[Cort]

I'll that the CAA would say that there were holes in each study and but I don't think they would say that each study was done poorly. Only Dr. Mikovits has said something like that and unfortunately that appears to have hurt her. Dr. Racaniello sarcastically stated...the WPI doesn't think anybody else knows how to do PCR.

Those studies are all little shots at XMRV. Dr. Mikovits should have and must have expected that researchers were going to use all different kinds of techniques to try and find the virus. Given that its probably not surprising that some of the studies were negative.

Why she just didn't duck her head and ride it out, I don't know. Doesn't she think that it's inevitable that once someone does a true replication study that the finding will be validated? If she has the evidence - and she appears to - why not keep quiet and wait for the right study to come along and prove it? Its like someone who has an Ace in her pocket but she's acting like she has a deuce.

I'm sorry but in my opinion she's handled this horribly and hurt the WPI at the same time.

 

[parvofighter]

What the Fukuda is going on here?!!!

Cort: How hard is it to add 5 no 6 words: These. Were. Not. True. Replication. Studies. What the Fukuda is going on here?!!!

You say, You cant call them lousy science. (referring to the across-the-pond dreck on XMRV) Darn right, I can.

1. So-called failure studies use one technique. Science uses 4.
2. So-called failure studies use blood that is as old as 20 yrs old.
3. None of the failure studies use Canadian AND Fukuda criteria. Including friendly researchers such as Jolicoeur and Kerr. Wanting to find the virus does not automatically connote good science.
4. The list goes on...

[FONT=&quot][/FONT]

Now why in heavens name is the CAA not putting qualifiers each and every bloody time they talk about the failure studies? They. Were. Not. Replication. Studies. As you and the CAA full well know, the international media compares these studies as apples-and-apples. It is a travesty of science that the CAA is not qualifying this information. The CAA - knowing full well the bastardization of the media message that has happened around the world - continues to obstinately refuse to call a spade a spade, and to be precise and accurate in their description of the XMRV work. Thats just plain lousy science.

EVEN if XMRV were to be proved a bust and I highly doubt that the CAA will go down in history as the most tone-deaf patient organization around. In the face of a potential retroviral pandemic around the world. And no, I didn't say the Science study was the endgame. It has to be replicated. But the CAA isn't helping us by imputing - through their sins of omission - that the Science study HAS been replicated.

Cort, you just dont get it. You are shooting yourself and this forum and its patients in the foot. Your comment is neither scientific nor rational. Please tell me, how is contributing to the fuzzifying of the understanding of XMRV research around the world, helping us patients? You can talk to as many researchers as you want, but until you start to think independantly about the issue around XMRV, you will continue to do us patients a disservice.


We are not asking for the "powers that be" to declare XMRV "it". That will only come from robust replicative studies. What we ARE demanding is accurate, precise, informative reporting by the CAA on XMRV. Each. And. Every. Time.


Rest assured, this is going up to the board.