Discussion in 'Action Alerts and Advocacy' started by Nielk, May 18, 2018.
Read entire blog here.
The conclusion of the IOM report is that ME/CFS is a physiological disease. We need funding so that science can lead the way, not more obfuscation. IMO the sort of advocacy work on this blog is self-sabotaging for the community, although I agree that the inquest into Lake Tahoe was mishandled and should be rectified.
I’m LakeTahoe ‘victim’, and have done my share of layman’s research into possible etiology of the CFS question there. In summary, only two things stood out: one was first hand account there by Erik Johnson’s claim that it was mold, even naming the exact location in and/ near an old schoolhouse. This is published in his first book on
his experience there. The other bewildering event was the discovery a year or so ago, recently, of a dead squirrel which had the Bubonic plague (NYTimes report).
Interesting fact...in New Mexico, we incubate bubonic plague, especially in our prairie dog and ground squirrel populations. There are a few cases each year of humans contracting it.
The IOM did not invent a new notion. We had over 6,000 published papers showing this is a physiological disease. The charge of the IOM committee was to create a new diagnostic definition in complete disregard of the ME experts and ME advocates recommendation - in consensus - to adopt and use the CCC.
The majority of the community consider the IOM/SEID criteria a failure. On every poll asking which criteria stakeholders prefer, they have chosen CCC and ICC over the IOM.
We need funding. I totally agree with you. The above blog does not negate the necessity for NIH funding. The question is funding for which disease? Studies using cohorts with overly broad definitions has given us the PACE debacle and many others.
ME stakeholders insist on a diagnostic and research criteria created by our experts of which ICC is the lates.
Additionally, The IOM is a clinical criterion, not research. It, therefore, has no weight in research decisions.
Yes, the IOM criteria is intended for clinical purposes only. Legit researchers are using stricter criteria. Heck, the NIH intramural study is using very strict screening.
I've just seen the argument about names raised many times and it is counter-productive if the goal is funding for research. A better name will come after the science. I am totally disgusted by the name "CFS" as my disease is dominated by cognitive and sensory issues...fatigue is only one symptom, and certainly not the worst.
What I did not like about the article was its attack on the very positive progress being made by MEAction and SMCI. The name issue and the corrupted history will taint forward progress. I know M.E. has gotten the shaft. My hope is that through science, interpretation of historical events will be corrected.
That is your opinion that MEAction and SMCI's actions are positive for the community.
I and many others in the community disagree and we should be able to freely voice our opinions. Those in the community who are advocating for the ICC criteria for both diagnostic and research purposes (it was created for both) feel that those two organizations who are championing the IOM criteria are working against us.
They do not represent us and their advocacy actually harms us. They do not have the authority to speak for us when talking to any government or private representatives and they have done so without our permission.
How would you feel if an organization would purport to represent our community and go to Congress to ask them to endorse a criterion for the disease which you feel would result in harm to yourself and other patients? would you just be quiet and sit back?
I guess we disagree about the best strategy here. I think that governments and social change happen in a clumsy and non-sensical fashion, not through logic and reason. I don't fully endorse the IOM criteria, but believe it is a start and will evolve through science (especially that cognitive dysfunction was not a required symptom). The report has helped lead to change, like funding of the collaborative research centers and the Intramural Study, because it lends credibility to a physiological disease...but yes, these are just my opinions.
ME experts such as Lucinda Bateman, Lily Chu, Ronald W. Davis, Nancy Klimas, Martin Lerner...? Oh wait, they wrote the IOM report.
Or did you mean ME experts such as Maureen Hanson, Jose Montoya, Daniel Peterson...? They reviewed the IOM report.
PLEASE, stop breaking up our community. We all agree CFS is a stupid name. We may disagree on how to fix it. But please let's stop fighting about it. This has been brought up a million times in the last decades and has gotten us literally nowhere.
To attack MEAction after what they've done and the way they have brought us together, over one thing you disagree with them, is baffling to me.
Be constructive not destructive in advocacy.
I do not know what majority you are referring to, but please enlighten me. And the 6,000 published papers documenting single findings have little weight on changing the average doctor's mind, whereas I know for a fact that the IOM document has been extremely helpful for many patients in convincing their doctors of the physical nature of their disease. In fact, in my country, the IOM report is the single major piece of work that has been referenced to consistently and has helped in forming the national treatment guidelines. If it wasn't for the IOM report, the guidelines would still refer to CFS/ME as a psychiatric disease treated with CBT/GET.
There is no such illness as ME/CFS. There is no billing code for it. In the USA you either bill for ME or for CFS. They are also separated by the WHO. The term ME/CFS is a political construct designed to disappear ME given the lack of success the CDC had with disappearing ME with their creation of CFS. Similarly, SEID is also a political construct. Given these facts we only have a few criteria for ME: Ramsay's, Hyde's and the ICC. The ICC's is really the one which best defines our illness and best represents the broad range of research and clinical expertise.
The HHS's reasoning for the need of a new criteria are a joke. How can someone get through med school and not be able to understand the ICC when thousands of non-scientific patients can understand it and use it? The HHS set up the committee's memvershipand terms of reference to ensure an outcome that would be dramatically different from what we have known as ME for decades.
The IOM was adamant that what they had created was only a clinical criteria and could not be used for research. It was bad enough when we had CFS criteria applied to what was supposed to be ME research. Now we have the NIH doing the same with SEID. The results of which are a cat's breakfast of subjects with differing illbessil that will ensure unrepeatable results and the continued lie that ME is a complex disease of unknown ependimiology.
ME Action and Solve are purpetuating decades more of suffering and death by lending their support to SEID.
This is how different criteria stack up against each other
Results: At 6 months of illness, SEID criteria identified 72% of all subjects, similar to when Fukuda criteria (79%) or the CCC (71%) were used, whereas the ME-ICC selected for a significantly lower percentage (61%, p < .001). When severity/frequency thresholds were added to the Fukuda criteria, CCC and ME-ICC, the percentage of these subjects also fitting SEID criteria increased to 93%, 97%, and 95%. Eighty-seven percent of SEID subjects endorsed cognitive impairment and 92%, OI; 79% experienced both symptoms.
Conclusions: SEID criteria categorize a similar percentage of subjects as Fukuda criteria early in the course of ME/CFS and contain the majority of subjects identified using other criteria while requiring fewer symptoms. The advantage of SEID may be in its ease of use.
The difference between SEID and ICC is measured in several percentages, hardly something worth throwing a fit about. Especially because there is absolutely no evidence that ICC is selecting "true" patients and not simply excluding some.
SEID and CCC select almost identical set of patients and SEID is easier to employ.
The only criteria that are truly unacceptable is Oxford criteria used in PACE trial.
ranging from 0.1 per cent [of population] using the Canadian Consensus Criteria, a relatively specific classification which is considered by many to most closely represent ‘genuine’ ME/CFS cases, to 3.7 and 7.6 per cent in a study using the Oxford and Australian definitions, respectively.
Brurberg et al. (2014) also showed that the Oxford criteria (Sharpe et al., 2015) yielded the highest median prevalence across studies, 1.5 per cent, 15 times greater than that obtained using the Canadian criteria,
this could lead to the selection of 14 non-cases (false positives) for every 15 recruited; an unacceptable level of misclassification.
The WHO diagnostic code G93.3 covers postviral fatigue syndrome and includes benign myalgic encephalomyelitis. There used to be a separate entry for CFS, but this entry is apparently being retired as in ICD-10 it reads as "chronic fatigue, unspecified", which is certainly not CFS as understood by the majority of patients. And nobody knows how ME or CFS will be classified in ICD-11, so you could just as well argue that all these are political constructs.
So are you saying that ME is not a complex disease and not of unknown epidemiology? Why are Stanford and Dr. Davis doing research from grounds up if this disease has a known epidemiology? If this disease is so clear cut defined, why hasn't Davis, who is regarded as one of the greatest scientific minds in his field, been able to solve this puzzle long ago? Why does all the latest research point towards multiple different diseases underlying CFS/ME?
I don't discount your reasoning at all and understand your frustration. I have it too, I just think it's an effort that will not be fruitful and is counterproductive by being divisive when we need solidarity. A proper name will come after proper science, which needs funding now. That said, SMCI and MEAction are making a difference for whatever disease we all have, which science will sort out.
Isn’t CFS an inclusion term under ICD-10 Diagnosis Code R53.82?
According to Dr. Bateman, calling the IOM definition ME “would have created even more confusion:”
The following were the authors on the ICC:
B. M. Carruthers
M. I. van de Sande
K. L. De Meirleir
N. G. Klimas
A. C. P. Powles
D. S. Bell
A. R. Light
J. A. Mikovits
M. L. Pall
The big difference between the ICC and the IOM is that the ICC was created independently from HHS. They were not constrained by the limits and control set upon by the government.
Investigators who are dependent on government funding cannot be unbiased operators. the experts who chose to break the stakeholders' boycott are all reliant on NIH funding.
The entire IOM process was a set-up from the beginning. The charge of creating easy criteria that anyone medical practitioner can use was problematic because this complex multi-system disease needs to be assigned to a medical specialty with trained physicians. This is not a disease that can be diagnosed in the 5 minutes allotted to each patient by their GPs. Many studies were left out of the study because they were deemed too small, too outdated or not evidence-based. Disregarding the assurances that the government would not interfere with the process once it started, CDC had repeated communications with the panel.
Each limitation of the process was to ensure that the outcome would be a vague, overly broad definition. That's exactly what we got.
Although the label CFS is a grave issue, this is not about the name - it is about properly defining the disease. As far as fighting and breaking up the community, this is not an attempt to form a social movement - this is about fighting for our lives!
I have seen too many friends with ME die or linger in a deathlike state. I will continue to stand up for what I believe is right and what will bring a real biomarker and treatment for all pwME.
Instead, you should tell MEAction and SMCI to align with MEadvocacy and ME advocates and stop fighting them.
You are moving goal posts. First you said experts weren't consulted. When I proved you wrong, now you're saying experts were, but were controlled by the government.
Dr. Davis, Dr. Hanson are literally fighting for the lives of their children. I don't buy it that they would endanger their children because of government.
And how exactly do you think we can fight for our lives without the social movement?
We are all here because we are suffering incredibly. We all are saying what we think is right. We all want biomarker and a cure.
I am lingering in death-like state. I am completely bedridden. I am having seizures evety day. I need a cure ASAP, because I won't survive more than a few years.
I respect that you don't agree with them on this, but you should look at the big picture and continue to support them.
I am sorry that you are suffering so deeply. You can then understand that the stakes are very high here. I cannot support those two organization because I and many other ME advocates believe that what they are advocating for will not bring us closer to solving ME. Their support and promotion of the IOM definition will ensure that there will be more conflation which stunts scientific advances.
Experts who have looked at the comparisons of the IOM and ICC criteria agree that they are not describing the same disease. Even the IOM panel did not advise that this new IOM/SEID entity replace the ICD code of ME. They realize that this is not replacing ME. But, by the exclusive use of the IOM criteria, ME will surely disappear. I am not willing to see this happen. I will continue to promote the use of the ICC criteria and will not accept that any advocate or organization who advocate for IOM represent me and other people with ME - because they don't.
You"ve quoted Nielk above, who wrote:
And you've countered:
Please recall, if you will, this statement: “We strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop ‘clinical diagnostic criteria’ for ME/CFS.” Its signatories include Drs. Lucinda Bateman, Nancy Kllimas, Martin Lerner, Maureen Hanson, Jose Montoya and Daniel Peterson:
Of those that you mention, only Drs. Lily Chu and Ronald W. Davis failed to publicly oppose the IOM Committee’s charge.
Every time I read these sort of posts I get extremely angry.
All of the people who are so intent on separating ME from CFS and not supporting all of the recent research on ME/CFS ( yes I said that! and I will say it again ME/CFS), are not helping anybody. I follow all of the research very closely and we are far closer to having answers than we ever were.
If ME was such a confirmed illness, with 6000 or scientific articles backing it, why are people in the UK with ME treated so appallingly? It's because the research up to that point was not that good. Small studies on only a few people, much poorer technology, no viruses actually identified, no actual evidence of brain inflammation and so on....all back in the 1980's.
It is only lately, with advanced technology and superb researchers that ME/CFS research is finally getting good data that can stand the test of further studies and peer review.
Would the ME patients prefer to go it alone? And potentially lose all the researchers that are currently studying ME/CFS?
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