It has now been over 500 days since Lombardi et al was published in Science. Yet we are being subjected to the publication of a five million pound study that was designed by people with conflicts of interest to prove that the treatment for ME/CFS patients is exercise and therapy. Isn’t it disgusting? Even though they excluded patients who were really sick or had neurological problems, and included some depressed people, they still couldn’t show more than small improvement in a little more than half the participants with a significant number of adverse events! For a disease that waxes and wanes a little if you do nothing. Lots of people can exercise in the early stages of the illness, until they can’t. Not a single lab test. It’s unbelievable that anyone would be willing to put their name on it. While new people are being infected, new babies being born with it every day, the British Medical Research Council spends a pile of money to try to prove that therapy and exercise are helpful, if you are well enough to attend regularly. What a joke! Except that it isn’t a joke. It’s barbaric.
Professor Malcolm Hooper’s formal complaint:
Magical Medicine: How To Make A Disease Disappear
This morning I got an email from an HIV specialist in the UK who would like to prescribe antiretrovirals for a patient with CFS who is XMRV positive and well informed. He is of course extremely experienced with the drugs. He consulted the necessary powers that be and was told that he couldn’t do it without collaborating with an ME/CFS specialist. An ME/CFS specialist in the UK seems to be a doctor who believes that the best treatment is to talk your patients into exercising. The mail I get from the UK is beyond heartbreaking. It seems to be acceptable to lock teenagers up in psychiatric hospitals, tell them they’re not sick and force them to exercise until they want to die. Why not just euthanize them? Save everybody a lot of trouble and money.
I’ve had a lot of mail lately about the CAA. The recent comments, and absence of meaningful commentary, by Kim McCleary, the president of the CAA, on CNN, are a disgrace: link. And the fact that Suzanne Vernon, the Director of research, has 30 papers on PubMed coauthored by William Reeves, most recently in 2009, pretty much puts the nail in the coffin for me. Is this really the best they can do with the 3.5 million dollars of public contributions in their last three annual reports?
I’ve been asked by several people to call the illness ME instead of CFS. Personally, I don’t think ME is much better. It hasn’t done much for patients in the UK. For now, X related disease works for me, X being not just XMRV, but what looks like in the end will turn out to be several or even many simple retroviruses.
I don’t see how anyone can read the following paper and still be in doubt. It is a public health emergency. To spend years arguing about what isn’t, instead of coming together to discover what is, no matter how devastating, compounds the crime against humanity that has already occurred:
Infection, viral dissemination and antibody responses of Rhesus macaques exposed to the human gammaretrovirus XMRV. Onlamoon
I got home last night from another successful trip to Reno to interview doctors. So far this morning, I’m doing well. I’m planning another short visit next week. Things are coming together very nicely. We have the pieces needed to move forward. I’ve stood beside Judy in the lab and looked at cells. I still don’t know enough to be able to second guess her work. I can’t evaluate the technical piece. But I can tell you that there’s not a mouse anywhere:) and that Dr. Judy knows her stuff. There is a fusion of knowledge and skills happening. We’re not going to wait for the scientific community to prove what should be obvious to anyone studying the pathogenesis in animals of similar retroviral infections. It took Barry Marshall seventeen years to prove to the world that H. pylori causes peptic ulcers, and he had to infect himself to make his point. We won’t ask our scientists to do that this time. Lots of the doctors I’m hearing from already have the illness.
>Thank you Jamie. I agree with every word.
V99
>Fantastic post Jamie! Just a note to say the PACE crap, I mean trial, actually cost 5 million pounds, or over 8 million US-dollars!
It's great to hear that UK docs are turning to you for help. I hope it long continues.
I am excited that you are interviewing docs! Can't believe it is happening!
>The PACE trial cost $8.1 million in the UK.
There are two major conflicts of interest involving Professor Peter White and the PACE trial other than the fact it was conducted by people who say ME/CFS is''fear'' of exercise (Chalder, a co-author)!
1) Professor Peter White is employed by the UK Government DWP as an advisor.
The DWP is the Department of Work and Pensions, the people who pay social welfare disablity payments to British ME/CFS patients. (Or don't when they read the PACE trial).
2) Professor Peter White also does consultancy work for RE:Swiss insurance company to advise them not to pay our disablity payments for people with private health care policies.
NICE little set up, isn't it?
>Great post and agree with all especially comments on CAA.
I gave up on them a long time ago and now fully and only support WPI.
>Thank you, Dr. Deckoff-Jones. You've given us more clarify and honesty.
Patricia Carter
>Signature:
How about Jennifer Spotila, Brian Smith, Kim McCleary, and Dr. Suzanne Vernon? Can we truly imagine our Community without them? I cannot.
Marly Silverman
>Klimas: ''CBT and exercise can be an important part of the treatment for CFS'' : Feb 17, 2011. WebMD.
Cort Johnson: ''I believe our goal should be to get the rest of the world to get to where Nancy is'': Feb 20, 2011. Phoenix Rising.
>Thank you so much! My eyes won't follow the text nicely and my brain won't absorb everything this morning, but I get the gist and it's uplifting. The junk science is junk, the true science is bringing us the truth, you're on the job bringing us the doctors and we shall overcome. When I send my monthly pittance to WPI, the 20th of each month in solidarity with other X-related disease sufferers, I'm happy knowing I'm supporting great work… and no mice.
~ Kassy
>"Why not just euthanize them? Save everybody a lot of trouble and money."
Well funnily enough, in the UK the debate has already begun.
http://www.blogistan.co.uk/blog/mt.php/2011/02/13/not-exactly-medical-journalism
My comments regarding blogistan post (Wellcome Trust is a massive sponsor of Wessely School research) – http://www.facebook.com/indigojo/posts/10150090692582507
Wessely School psychiatrist Matthew Hotopf Editorial on assisted suicide in British Journal of Psychiatry http://bjp.rcpsych.org/cgi/content/abstract/198/2/83
Wessely talks about euthanasia (~2m40s) – http://www.medicalcareers.nhs.uk/specialty_pages/psychiatry_information/a_career_in_psychiatry.aspx
>Very nice to know that the WPI has been scrubbed free of mice. LOL.
And thank you, thank you, thank you for giving the PACE authors and the CAA the verbal slaps upside the heads that they so deserve. These performances are disgraceful.
>From the UK here,
just letting you know, in the unlikely case of our meeting, I shall try to give you a huge hug.
I know you and the WPI are very busy, but we British could really do with clones of you all. Pretty please, with a cherry on top.
big big ThanQ
fly
>McCleary's only reported problems with this study is that these therapies- GET and the evil version of CBT- which she calls beneficial on CAA's facebook page and in the NPR interview- aren't available in the US and that studies of psychological factors may make "CFS" patients feel that people are saying "CFS" is psychological. It seems apparent to me now that giving Peter White his own little section in the Spark materials to promote GET as the "only treatment proven effective" was no oversight or accident!
I did actually really hope that CAA would shift it's approach when all the criticism settled in and it's board had more time to reflect on the fact that every aware ME patient knows what CAA is doing and that consequently its revenues are going to continue to slide until there are not enough to support it at some point in the not too distant future.
Something is really weird here, imo. The fact that she is continuing in this destructive path i can comprehend. The worst that can happen to McCleary and Vernon is they milk CAA for all the cash they can before it implodes and they get an early retirement with a nice nest egg. But why is the board, who are unpaid patients and patients' relatives behind them?? They see McCleary piloting CAA into the ground while packing her parachute with cash to soften her landing. Why are all 15 or how ever many of them there are just sitting there and supporting her?? Is she hypnotoad? Using jedi mind tricks on them? Noone can be that charming. Am I missing something??
Her comments on the PACE trial results are a case in point. The PACE paper isn't some random thing out of left field. We have known about the PACE trial and methodology for a long time and it has been criticized heavily and in detail by others. She should have been prepared and ready to say only four things when media called:
1. This is a scam
2. The cardinal feature of ME is PEM
3. They do this scam by using a fake definition to lie and say tired and depressed people have ME and
4. These 'therapies' are human rights abuses: lying to patients to tell them they have no disease and to exercise, the exact thing that will make their severe illness even worse.
George W. Bush was a moron and he could stay 'on message'. She can do this. Once she has mastered this, she can move on to 'freestyling', not before. And until she can deliver messages which benefit patients, she should not speak.
The only problem she seems to have with the PACE trial is that the GET and CBT programmes are not available in America!
That is true advocacy at its very finest!
>Marly Silverman
Quote
Dr. Nancy Klimas in the past publicly refuted Dr. Peter White's assumption that CBT cures individuals with ME/CFS. His response to Dr. Klimas was that there are no "published CBT studies" which would contradict his own. So recently a CBT study conducted 12 years ago was finally published and Dr. Klimas can now state with scientific support that CBT does not reverse nor cures ME/CFS. We have the answers we need to to put an end once for all on Dr. Peter White's assumptions. Time to conduct the scientific research that needs to be done and apply much needed funding to biomedical research looking at the immune system and its interactions with other body systems. The time is now!
Marly Silverman
http://www.facebook.com/notes/marly-silverman/dr-nancy-klimas-has-refuted-once-for-all-dr-peter-white-cbt-assumptions/154771197910339
A pilot study of cognitive behavioral stress management effects on stress, quality of life, and symptoms in persons with chronic fatigue syndrome☆
Corina Lopez, Michael Antoni⁎, Frank Penedo, Donna Weiss, Stacy Cruess, Mary-Catherine Segotas, Lynn Helder, Scott Siegel, Nancy Klimas, Mary Ann Fletcher
Quote
The results of the present pilot study suggest that adding relaxation and coping and interpersonal skills training to CBT when done in groups (i.e., CBSM) may reduce distress, enhance quality of life, and reduce CFS symptoms.
could not have been better for Peter white if he had conducted the study himself!
>You're right we have to speak up against these crimes such as the PACE study.
fwiw: links to McClearys comments and my take on the McCleary situation:
http://forums.aboutmecfs.org/entry.php?809-CAA-GET-and-CBT-effective
>Thank you Dr Deckoff-Jones for another wonderful blog which sums up the situation perfectly, especially with regard to the PACE/CAA debacle.
It is very encouraging to hear how things are progressing in Reno on the clinical front.
Thanks for telling it like it is and for giving us hope!
froufox
>Thank you for all you are doing…we continue to lay on the couch waiting and trying to hold onto hope that help will come!
>This is such a great blog! Thank you Dr. Jamie. Hugs!
>The CAA and their Asscociates do not represent us. They only represent themselves. I call for their removal of advocating for ME/CFS patients. We continue being sold out by these people so they can benefit financially off us. If they need a business venture then they can sell something else besides the lives of the sick and dying
>Absolutely fabulous! Thank you!
>A little island of sanity, in Reno and in this blog. Thank you Dr Jamie and please pass on this message to those fighting for us.
>Bless you, Dr Jamie. Please make sure to look after yourself – we need you functional!
Regarding the CAA, there is a damning poll on PR, http://forums.aboutmecfs.org/showthread.php?10169-Caa-poll where at present 78 votes split 4 wanting some or no action, and 74 want the CAA to change leadership and direction.
>Great post, Dr. D-J, very well said. Hugs!
>Thank you !!!!!!!!!
.X..AND, that's the way forward !
>There are a few Doctors in the UK who treat people with ME with dignity and respect and who believe that the illness is real and 'biological'. One of them is Dr. Sarah Myhill.
If this HIV specialist needs to talk to a Doctor who is hugely experienced in dealing with ME, then I am sure she would happily respond to his inquiries. Look her up on the web – just search Doctor Myhill.co.uk.Contact details are on her website.
>un petit hommage:
you rock, dr deckoff!/ oh dr jones dr jones dr jones, you got a thing goin' on!/ dr dj–i love it!–drive us onward,/ back to what we lost so long ago/ on that long long long and winding cfs road./ change the rhetoric, make it real,/ clean out the house of these so-called helping professionals./ follow dr dj, get down tonight,/ support whittemore-peterson, for life! l'chaim!
beaucoup d'amour et merci beaucoup, ~laura tattoo (malade 15 ans)
>Great post! I live in the UK and have had ME for 25 years. The PACE trial is a disaster for us. It doesn't matter what the results really are, it's how it's going to be used against us by our health service and government benefits agency that will do the damage. We are desperate for biomedical research to get definitive answers on cause and to provide effective treatments – until then, we're living the Kafka nightmare. Your post (and your job post!) give me hope. Thanks for all you are doing for us.
>Dr. Jamie,
I'm very glad you spoke out about this, and with such brash honesty:
"It seems to be acceptable to lock teenagers up in psychiatric hospitals, tell them they're not sick and force them to exercise until they want to die. Why not just euthanize them? Save everybody a lot of trouble and money."
We can't forget that people affiliated with the UK psych lobby are on the committee to turn ME/CFS into a psych dx ("Complex Somatic Symptom Disorder") in the DSM-V in the US: http://cfsuntied.com/blog1/2010/02/12/dsm5-ticket-back-to-reevesville/
I have some stories from this side of the pond that make it fairly clear the psychiatric abuses are not just happening "over there." Reeves' "personality disorders" study (http://img79.imageshack.us/my.php?image=edsc07794wt2.jpg) and all that came before it certainly gave the US lobby plenty of fuel.
Peggy
>They'll keep cranking out these bogus studies until someone — most likely from WPI — finds an actual cure. Or at least an effective treatment.
So the question is, how do we raise funds for WPI? The government is obviously uninterested.
>I sometimes think of making a TV advert. If everyone in the UK with ME donated £2/3, then I am sure that we would have enough money to make one.
We need to show the British public the truth behind the illness – teenagers being tube-fed and children unable to walk, mothers unable to look after their children. Before and after videos of healthy,happy people reduced to mere shells of their former selves.
The public pay no (or very little) attention to the waffle and the politics. ME is just something that they know very little about and frankly the public just don't care. This disease needs to be explicitly revealed to the general public, with images that will remain in people's minds.
We need a tag line – something like – 'your sister, your mother, your Father, your Brother, your lover? Who's next?'
We desperately need publicity and the Govt. is giving us the wrong sort. Is there any way we can help ourselves to get something big started?
What can we do?
>A HITCH HIKER'S GUIDE TO THE HISTORY OF MYALGIC ENCEPHALOMYELITIS & CHRONIC FATIGUE SYNDROME
-Byron Hyde M.D.
• In the Lake Tahoe epidemic as in the previous epidemics described, the type of Central Nervous System involvement was obviously of a more diffuse nature and the type of peripheral involvement that caused so many troubling symptoms in all these epidemics was consistent with a very low grade vasculitis (See Mercy San Juan Hospital Epidemic) or in many cases a classical radiculopathy (spinal nerve root involvement) or even a very low grade Guillam Barre Syndrome as was described by Alberto Marinacci when he examined the Las Angeles County Hospital patients. (See Dr Marinacci's book Applied Electromyography. Lea & Febiger, 1968: Chapter 9). However, I should note that the mere mention of Guillam Barre Syndrome drives many neurologists crazy. They say that GB Syndrome is a severe disease that if not treated effectively may kill or leave the patient permanently disabled. However, all real diseases have a wide variety of penetration from so mild that they may be missed to, in some diseases, having potentially mortal consequences.
If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.
———————————–
As an Incline Village survivor, I don't have to say "CFS".
There are many other well-known terms which I can use as an alternative, and still get my point across.
I do it to clear up any confusion of what CFS is.
It is the name of a syndrome that was coined in response to an outbreak of illness which possessed all the primary definitional determinants of ME.
>Now, as the news of the spinal fluids study moves into the forefront of the news, shoving aside the PACE nonsense, I feel more strongly than ever that we must be at the tipping point. Science will outweigh barbarism, and real tests and treatments will become available at last. Thanks so much for helping us all hang on.
One request: Could you perhaps direct a post specifically to doctors? A sort of introduction for the gp's and specialists whom we are asking to contact you? If you would do that, and link it in your sidebar so it's always handy, that would be a great help to patients like me who have doctors who are open to cooperating but don't quite see how. They need a quick overview showing where they fit in.
Thanks so very much!
Kassy
>Is XMRV over??
I read Dr Greg Towers paper and never before have identical intergration sites of a retrovirus been shown before, is this contamination ? Or unique to XMRV?
Should all XMRV Positives get re-tested?
>Hi Jamie,
If I remember correctly you mentioned that you will be providing guidance to local physicians through the WPI clinic. I have yet to be tested for XMRV or had many of the other tests that have been mentioned online. Have you thought about or are you going to have available a list of tests that are used to help both patients and doctors to discern the impact of CFS on the patient. My hope and expectation is that the WPI will be a resource for people with CFS whether or not they test positive for XMRV. Since the clinic will only be able to support and/or treat a limited number of patients how will you be offering support to patients and their doctors who are not first in line yet very much need the expertise that you and the WPI clinic have?
Thank you for all that you have done to keep us informed. Your courage and tenacity have and will help us all.
Cathy
>hi Jamie
My summary of the CROI abstracts would be that XMRV is hypothetically a contaminant if hypothetical situations existed
This passes as science these days!! My tutor must be turning in her grave
I have just been e mailed by a scientist with a good reputation to be told that xmrv cannot display any genetic variation. The logic was that the virus named XMRV by Silverman and others did not. display any great sequence variability.As that virus was called XMRV any strains could not be called XMRV I am losing the will to live!
What the hell has happened to science?
even worse this idiot had convinced himself that he was right
>After finishing watching the CROI video I was so angry. They have plans to investigate the biology of the virus because it is interesting, but they will no longer be looking into whether or not it is an infectious disease???!!! Who cares about the people who are sick and need answers, right?!! We are not "interesting." Our sick children are also not "interesting."
They continue to claim their is no infection, yet they are extremely worried about people who have been working in their labs that might have been exposed to XMRV!! Can you say hypocrites?
Further, they know that after being infected with the virus for more than a few weeks, the virus clears the blood. But, most of the researchers continue to work with blood rather than tissue. And then, to top everything off, at the end of their question and answer session, they have a good laugh at the expense of us crazy CFIDS people.
After being steaming mad for awhile I started thinking about things. I'm already sick, I can't get sick again. My family can't get sick again. But, they can still get infected. The longer they ignore this, the greater chance they have of becoming sick themselves. For their sake, I hope they have a good relationship with Karma!