Tuesday, June 14, 2011

The blood boils

Exchanges of letters are always interesting - and revealing. One can spend a long time - a life-time - waiting for a response letter like this one from Wanda Jones - to Dr. Joan Grobstein. It is a whopper, a classic of avoidance, and with short-circuited, empty promises. The sophisticated reader can detect a bit of irritation here - even petulance - and a veiled threat too.

Dr. Grobstein's articulate and respectful documentation of misdeeds taking place at the recent CFSAC meeting remains unanswered in substance. It is met by a contemporary "open/closed" mindedness. Frankly, we are sick of this.

Wanda Jones did learn a bit from the preceding exchange, keeping this one short, thus avoiding revealing too much by running on and on. However, she is unwilling to address the main issues, or to take responsibility for the very crude, illogical and inexplicable behavior towards patients at the recent CFSAC meeting, an "event" for which she is responsible. What can be done with such a person? The answer is - nothing can be done. Such people are insulated from reality, and can do whatever they please, subject to the whims of their bosses. While Wanda Jones moves on to more fertile pastures, will her replacement be more just, more reasonable towards ME/CFS patients? Don't count on it.

We are trained in modern times to know that small, seemingly innocuous responses can have big meanings. This letter reveals a complete and total world of indifference. There are those who will say this - Please leave Wanda alone, she is the friend of CFS. Let me tell you that these people are wrong. One more friend like Wanda Jones and ME/CFS patients are finished.

Please do not miss the quotation at the end of her letter.

Here is her letter:

Dr. Grobstein,

We are moving forward to clarify instructions with staff who are supporting future CFSAC meetings.

The resting area we provide at the back of the room, separated by partitions, is a courtesy accommodation we provide to people with CFS who attend the meeting. We are not required to provide footstools, benches, cots, or other types of accommodation that have been requested over many years by persons with CFS. Our videocast of the meetings has provided access to more people than we could ever accommodate in one physical facility, and we will continue to provide that service.

If you choose to attend future meetings, I hope you will find them improved by your suggestions.

Wanda K. Jones, Dr.P.H.
Principal Deputy Assistant Secretary for Health
Designated Federal Official--Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services
200 Independence Ave. SW, Room 716G
Washington, DC 20201
Phone (main) 202 690 7694
Phone 202 260 4432
Fax 202 690 6960

"Mobilizing leadership in science and prevention for a healthier nation"


  1. In other words, Ms. Jone is saying that we don't know how good she has been to us-honoring our ridiculous requests for access to meetings and respectful treatment that would be accorded attendees at any other meeting, but be warned, those days may be coming to an end...

  2. Anonymous,

    I think that about sums it up.

  3. I always thought Wanda was off the moment she happened to manage to invite John Coffin to the CFSAC in 2009. No, that was the way it was sold to everyone. The truth is, he had to be there to have his face known for the day he would turn around and try to sell the story of the virus being dead. But it isn't dead and it is time we rid ourselves of these people.

  4. In other words, we don't want you here interfering with our meeting, shut up, stay home out of our way & be grateful we let you know anything about it at all.

  5. Dr. Wanda Jones typifies the archetypal committee chairperson, for whom the process appears to be far more important than the outcome.
    The CFSAC has therefore achieved very little under her "leadership".

  6. We need to understand the situation beyond the emotional.

    I think that too many are caught up in their own stuff and miss the bigger picture.

    Those with ME are barking up the wrong tree. This is a CFS committee. ME/CFS is our own creation but HHS does not recognize it. There are those who are wedded to this as is if it is some major improvement or ultimate solution, but think this is really another trap and distraction and a colossal waste of time.

    CFS is what it is. Reasonable accommodations are for a resting area. Nothing more.

    Wanda Jones runs the meetings. She is NOT supposed to influence the outcomes. It is an independent advisory committee that is NOT controlled by HHS. That is the purpose.

  7. "CFS" is the only foot-in-the-door that ME ever got.

    Straus was very much aware that a trivializing name would mesmerize foolish patients into attacking the syndrome, erasing any progress they made.

    If CFSer let the people who can't look beyond their emotional response to this transparent ploy, PULL that toehold back out.... do they honestly think this well induce the CDC to throw the door wide open for ME?

    Perhaps in gratitude for helping them to demolish CFS patients and keep them "forever fatigued"?

    Dream on!

  8. "Our creation"?

    What happened to "ME/CFS is the ultimate betrayal"?

  9. "Indifference." This is the right word. Dr. Jones works for the US government and she does her job. The government's attitude towards M.E. suffers is clear: indifference. They do not want to see us, hear from us, or even have us exist. They want us out of their way. And they have been successful in keeping us invisible and silent for 30 years. Do we want another 30 years of this?

    Patricia Carter

  10. CFS has hidden and obliterated ME. CFS patients are fatigued. If not, then they do not have CFS.
    And wildaisy, this has nothing to do with ME sufferers. CFS has kept ME invisible. As are phony ME groups playing the CFS game. Keep playing these games and guess what....

  11. Thank you Patient Advocate.

    Paul Watton said "...the process appears to be far more important than the outcome."

    It appears that way because to them, it is.

  12. The story is all in the ending, as it is with this letter.

    "Mobilizing leadership in science and prevention for a healthier nation"

    Our Government and the philanthropic private arms are giving to "Prevention". Billions (not millions) are being granted/given towards prevention rather than diagosing and curing those who are already ill. Economically and scientifically, an ounce of prevention is worth a pound of cure. This is Fact.

    However, once we are born, we have "human rights". Those rights include the rights to obtain viable medical diagnosis and treatment. To ignore this, and if patients populations are left untreated/ignored/suppressed or overlooked and patient numbers rise to the millions to tens of millions left untreated...this is tantamount to Genocide.

    Julia Hugo Rachel

  13. thank you julia - in the end that is what matters.

  14. If "CFS is just fatigue",
    then the CDC/NIH never ignored it.

    One has to be officially "aware" of something before they can "officially" be caught ignoring it.

    It all comes down to whether or not they knew what it was, that they called CFS.

  15. The only thing they ever might have done wrong is that they haven't yet become "aware of ME".

    And despite persistent rumblings of strange evidence and "suspicions that something is out there", undoubtedly will continue to not quite become aware of it.

  16. Erik, this is what advocacy is for, not making excused for the obfuscation as denialists always do.

  17. You mean the obfuscationists and denialists who tried to hide what CFS really is by saying
    "CFS is just fatigue" "CFS is not a neurological illness" "CFS is what the psychs say it is"?

    Yup. Advocacy will expose those evil rotten bad lying people for what they really are!

    See? We agree on something.

  18. The obfucationists and denialists are those who ignore the facts and deliberately mislead for some agenda.

    1. CFS is fatigue by definition. You really want to keep the CFS is not fatigue game going? Rational people should give this some thought.

    2. It is not neurological.

    3. It can be what the psychs say it is by nature of the definition.

    Keep the delusions going and we'll all stay sick.

  19. CFS happened exactly as described in Osler's Web.

    CFS is the term given to "a typical outbreak of ME"

    CFS is what we say it is by virtue of being exactly the illness that it is.

  20. Actually it is not any longer (what occurred in Incline Village). You can call anything whatever you want, but in medicine if the description does not fit that which is being described then all bets are off.

    And real advocates want it (what was ME) to be called ME.

  21. When a term is applied to an entity, the term and that entity are intrinsically connected.


    Even if the name is given again to something else, that will alwasys be "something else".


    ME... IS called ME.
    We were discussing CFS.

  22. Well, now they have turned on Wanda as well as Peterson. Who is next, Judy, if she is proven wrong?

    Good letter, Dr. Jones. Don't waste any more time with these paranoid people. I'm sorry they took your time away from helping us. Know that we continue to appreciate all you have done for us.

  23. If a term is applied to an entity but the meaning of the entity is significantly and intrinsically changed so as not to actually describe said entity, then it is no longer applicable.

  24. Any change to the "intent" of what is being researched, and any alteration which diverts the focus of the syndrome is either inadvertant or is intentionally contrived.

    If the first, an honest mistake, easily corrected in those who are honest.

    The latter, a deliberate lie, not correctable by words, facts or evidence.
    Because such people already know what they are doing is dishonest.

  25. Sure if it was an honest mistake it would be easy enough to recognize it as what it was - ME. Yet lies are correctable. The perpetrators will not, of course, but those who recognize them will. Unless there are those who want the lies to continue. A dishonest intent will be met with resistance and misinformation and dissembling, as with those who try to keep and justify the use of CFS.

  26. Then you must say "CFS is ME", as you just did on another thread when you assert that CFS "failed".
    CFS wouldn't "fail" if it were a fatigue illness, because that would be a perfect name for one, so your arguments contradict each other.

    Once again, you attack the WPI, CFS Patient Advocate, and all others who "Justify CFS"?

    Perhaps the "Think pple" understand that it's OK to contradict ones-self?

    Have you ever considered becoming a spokesperson for "Split Personality Syndrome"?

    You'be be very good at it... at least 50% of the time.

  27. Erik, You or anyone can advocate for CFS. CFS is a fatigue syndrome. But CFS is not ME.

  28. Jill, when you assert that "CFS failed" (because it was a bad name for ME), or that "Things have moved on since then", would you please identify yourself as "Jill A"
    (These are assertions that imply CFS is ME)

    And when you switch to "CFS is a fatigue illness" and "CFS is not ME" therefore contradicting the other Jill, could you let us know by signing it as "Jill B"?

    It's obvious in this last message that you are being a "B".

  29. Erik, this is not a contradiction that I created. You make no sense.

  30. Is this "Jill C" talking?

    No "C"ontradiction between asserting that CFS was wrongly given to ME, and the conflicting proposal that it never was, and so... is not?

    Do you have any memory whatsover of what Jill A and Jill B said?

  31. Erik's right back to making things up.

  32. You're one small baby-step away from

    "I know you are so what am I?"

    Ain't we got infantile fun?

  33. Apparently you are having infantile fun, but you are making things up and I do not wish to. The point is that patients have been lied to and turned away from the meeting. I applaud them for taking a stand and thank you to Dr. Grobstein for the follow-up.

  34. You mean the "sadistically insane" Dr Grobstein who is "harming patients" by "clinging" to CFS?

    Dr Grobstein has taken a stand that CFS is what she says it is.

    You are both fighting her and applauding her in successive assertions of your philosophy.

    Or is this some other "Jill" personality speaking, that is separate from the others?

  35. Erik, You're making things up again, which is nothing new, but this is not about anyones philosophy. It is about a public meeting published in the federal register that anyone who so wishes has the right to attend.

  36. Jill, when you see these posts signed "Jill", do you recognize them? Any memory of writing them?

    If not, perhaps you should sign them "A" or "B" so you will know what your alternate personality is writing when you're not around.


    "CFS slams the door on any understanding, concern or funding. Only a sadist would try to justify or promote "this illness" as CFS"