#pwME

Emperor CDC’s New Clothes

/ Gabby Klein / 3 Comments

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The much-anticipated revision of CDC’s website on ‘ME/CFS’ section “Information for Healthcare Providers” was unveiled July 12, 2018.  The main reason for the revision was to adopt and educate medical professionals to diagnose people using the government-sponsored clinical IOM/SEID criteria and to update the toolkit based on current scientific data. 

The result of the CDC website update is full of deceptions and in many ways worse than the old toolkit for medical professionals.

Problems and Danger with Adopting and Using the IOM/SEID Criteria

ME advocates have warned that the 2015 government-sponsored IOM/SEID criteria are even worse than the failed and highly criticized government 1994 Fukuda definition.  Critics of the Fukuda definition argue that it was overly broad with too much emphasis on the one common symptom ‘fatigue’. The IOM/SEID definition is even more vague.  Unlike the Fukuda, it doesn’t specify exclusions which means that many people suffering from primary psychiatric and psychological conditions will get a diagnosis of IOM/SEID.

Even worse, the new criteria do not demand any neurological nor immune dysfunction symptoms! Investigators (Dr. Leonard Jason, Frank Twisk and Asprusten et al) who have looked into the IOM/SEID criteria and published papers comparing it with other definitions have warned that it does not define the neuroimmune disease myalgic encephalomyelitis (ME) as defined since 1969 by the World Health Organization (WHO) and coded under Neurological disorders as ICD – G93.3.

The IOM authors clarified this distinction as well.  They stated that the entity they were defining was not a neurological one.  It was a broader entity with subsets which remain to be defined.  They were clearly not defining the distinct disease ME as per our international non-government medical ME experts with their 2011 International Consensus Criteria (ICC). This comparison chart created by the patient organization MEadvocacy.org is an easy visual tool that illuminates the difference.

The danger of using the broad IOM/SEID definition is that the pool of patients diagnosed will be a muddied group.  It will be harmful to those who suffer from ME as per ICC and those who suffer from other conditions for which they lack proper diagnosis.  To properly treat patients one needs to identify precisely the disease they suffer from. It would be like throwing people who suffer from rheumatoid arthritis and osteoarthritis together under one rubric because they share many of the same symptoms. This conflation would be dangerous because as we know, the treatments are entirely different.

Even more alarming, ‘ME/CFS’ investigators working at NIH funded ‘ME/CFS’ consortia are currently using the clinical IOM/SEID to select their cohorts in their studies!  Using this faulty criterion will cause the group to be made up of people suffering from different conditions. The results will be skewed whether searching for a biomarker or successful treatment options. It will be impossible for future researchers, who are unfamiliar with the criteria issues, to duplicate studies as they will have no way to know how to select patients correctly.

Harmful GET recommendation Without the Name Remains on Website

CDC’s previous toolkit for providers recommended graded exercise therapy (GET), stating: “Graded exercise therapy (GET) has shown to be very helpful to some CFS patients. Graded activity and exercise are defined as starting from a very low, basic level of exercise and/or activity and gradually increasing it to a level where people can go about their daily life. NOTE: the level of activity may not be the same as before the CFS diagnosis.”

CDC’s current toolkit treatment section recommends: “Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning Some healthcare providers with expertise in ME/CFS refer their patients to an exercise physiologist who understands ME/CFS and uses an individualized and flexible approach to advancing activity levels.” [bolding for emphasis]

CDC is in effect still educating doctors to recommend people with ‘ME/CFS’ exercise incrementally.  This description is what graded exercise is, and it is genuinely devious of CDC who many in the community have hailed for supposedly removing GET from their toolkit, only to see them re-introducing it in a concealed manner.  ME advocates and patients who have been on this road with CDC for decades are not surprised at their repeated deceptions. Their malfeasance has no bounds, and they will do anything to cover-up the reality of the neuroimmune disease ME which has appeared in many worldwide outbreaks and the sporadic form.

Dangers of Conflation Which Result in the Burial of ME

CDC states: “There is no consensus on whether CFS and ME are synonyms, different spectrums of the same illness, or distinct conditions.”

These words describe the crux of the problem with the government’s attempts to cover-up ME.  It benefits HHS to keep it all a big, muddied, confused heap of nothing.  It has been their intention from the start – to make ‘CFS’ go away. As a 1994 letter obtained through FOIA effort by advocate Craig Maupin from NIAID’s Dr. Straus to Dr. Fukuda states:

“I’ve felt for some time, Kieji, that those that have CFS are at a certain point along a continuum of illness in which fatigue is either the most dominant symptom or the most clearly articulated by virtue of impression on the part of the patient or physician that such a complaint is important. I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate. We would then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.“

HHS and its agencies have purposefully acted to conceal the fact that this is a distinct disease with its distinguished history.  They have repeatedly misbranded (CFS, ME/CFS, SEID), misdefined (Fukuda, Reeve’s, IOM/SEID) the disease to keep the confusion going.  They have also falsely combined ME with CFS as in ME/CFS to perpetuate the confusion. It’s like calling a disease lung cancer/cold!

In the same vein, HHS repeatedly refuses (in contrast with other diseases) to accept and adopt criteria created by the international non-government experts in the disease [Canadian Consensus Criteria (CCC) and ICC] which clarify and distinguish ME.  With the same concealment tactic, CDC erased our experts’ criteria CCC and ICC from their resource section.

Other Tactics Used by CDC to Minimize the Disease

  • CDC prides itself on the use of evidence-based scientific data, yet they state on their new website “Some patients return to full function” as if that is a scientifically proven fact.  Which evidence-based studies is CDC relying on when making this positive statement?  I would argue that there is more evidence of people with ME #(pwME) dying from ME than fully recovering from the disease.
  • In their Spectrum of ‘ME/CFS,’ CDC states: “For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life.” This statement gives the false impression that pwME if managed well, can perform normal activities of life.  It is a false assumption and does not ring true with pwME. For an ME diagnosis, pwME need to have extensive reductions in previous activity.  Activity management might ensure that they do not aggravate their condition and avoid crashing but, it does not improve their base condition.
  • CDC states: “From a clinical perspective, case definitions are used to make the appropriate diagnosis and guide therapy and management. From a research perspective, case definitions are used to identify the appropriate study population. Multiple case definitions may be required for different applications and can co-exist if there is a good understanding of how they are being used.” Historically, HHS has conflated the purpose of criteria.  They have used definitions whose goal was for research, in clinical settings and vice versa.  ‘ME/CFS’ investigators are already using the clinical IOM/SEID definition for studies at the NIH funded ‘ME/CFS’ research consortia – despite assurances it by HHS they would solely be used for clinical purposes!
  • In CDC’s attempt to conceal any possibility of an infections agent playing a role in ME, they have omitted the history of ME and the fact that it appears in the epidemic for with 50+ worldwide outbreaks.

It is alarming to see this revised CDC criteria in 2018 – more than 30 years after CDC was called down to investigate the massive Lake Tahoe outbreak.  The name, definition and data do not reflect the findings at Lake Tahoe nor the WHO 1969 defining  ME under neurological disorders nor the 2011 International Consensus Criteria defining the distinct disease ME.

ME advocates worldwide are rightfully aligning in their fight against the PACE Trial with their recommendation of the harmful treatments of graded exercise therapy and cognitive behavior therapy.  ME advocates need to do the same with CDC’s revised website which is deceptive because like the Emperor’s New Clothes – it is just more of the same wrongdoing. ME advocates need to rigorously fight CDC’s dangerous recommendation of GET and their use of the vague IOM/SEID definition which will result in the burial of the distinct disease myalgic encephalomyelitis. 

Resisting Attempts to Silence #PwME

/ Gabby Klein / 4 Comments

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Methods of Silencing Dissent to Control a Specific Agenda

Globally, government agencies and officials as well as private sector companies, and organizations use known astroturfing and silencing methods to achieve their intended goals.  They use media to spread propaganda to manipulate opinions. They employ specific tactics to squash dissent to institute their desired agenda. 

In the myalgic encephalomyelitis (ME) community, this method of controlling a specific intention is used by government health agencies, medical interest groups, and those supporting them.  They advance the false narrative that ME is not a distinct disease but, a collection of fatiguing conditions.  They also perpetuate the myth that ME is imagined – a functional somatic condition.

This government deceit harms people with ME (pwME).  The underhanded conflation of ME with chronic fatigue syndrome (CFS), chronic fatigue (CF), and psychosomatic conditions results in falsely depicting the disease as a benign condition, possibly just in the mind of the patients.  The medical community has therefore in the main dismissed this ‘vague condition,’ neglecting to care or study it. 

Those whose interest lies in perpetuating this myth because of financial benefits or other motives use established methods to advance their biased goals by spreading misinformation and falsely accusing those who dare to speak out about the malfeasance. 

Methods of Silencing a Group of Activists

Ron Duchin, research analyst at Mongoven, Biscoe & Duchin Inc., in Washington DC, created and utilized specific techniques to break up activists groups who were fighting for social justice such as environmental groups, animal rights groups and consumer affairs groups. His famous legacy was breaking up civil rights activists groups fighting the tobacco industry.  He later used this plan advising other industry giants in how to fight any dissent which was adversely affecting their objectives.

Duchin explained that activists fall into four categories: radicals, opportunists, idealists and realists, and that a three-step strategy was needed to bring them down.

  • First, you isolate the radicals; those who are vocal in their desire to change the corrupt system and promote social justice. Then use methods of character assassination to discredit them – such as exaggerations, lies, trumped up charges to marginalize them.
  • Second, you carefully cultivate the idealists; those who are quieter and are not as direct in their methods and objectives as the radicals. You do this by gently persuading them that their advocacy has negative consequences for some groups, thus transforming them into realists.
  • Finally, you co-opt the realists (the pragmatics willing to work within the system) into compromise. “The realists should always receive the highest priority in any strategy dealing with a public policy issue . . . If your industry can successfully bring about these relationships, the credibility of the radicals will be lost, and opportunists can be counted on to share in the final policy solution.” Opportunists, those who are motivated by power, success, or a sense of their celebrity, will be satisfied merely by a sense of partial victory.

Astroturfing Methods to Manipulate and Control an Agenda

What is astroturfing? (Astroturf and manipulation of media messages by Sharyl Attkisson – see video here)

Astroturfing is the attempt to create an impression of widespread grassroots support for a policy, individual, or product, where little such support exists. Multiple online identities and fake pressure groups are used to mislead the public into believing that the position of the astroturfer is the commonly held view.  The goal is to neutralize any opposition.

Tactics:

  • give the impression that there is widespread support for or against an agenda when there’s not
  • seek to manipulate and change opinions by making some feel like outliers when they’re not
  • seek to malign those who openly disagree with the intended view
  • attack those who publish articles they don’t like or whistleblowers who tell the truth
  • intentionally shove so much confusing and conflicting information into the mix that you are left to throw up your hands and disregard all of it, including the truth

How to Recognize Signs of Propaganda and Astroturfing

  • use of inflammatory language such as crank, quack, nutty, lies, paranoid, pseudo and conspiracy theorists
  • personal attacks on individuals and organizations surrounding an issue rather than addressing the facts
  • reserve all public skepticism for those exposing wrongdoing rather than the wrongdoers
  • instead of questioning authority, question those who question authority.

Methods of controlling an agenda and minimizing dissent in the ME Community

  • Labeling ME patients with a demeaning name – chronic fatigue syndrome – to reduce impact and cause marginalizing of patients (See HHS Refuses to Correct their Wrongful Branding).
  • Defining the disease with government-produced vague criteria which include many who suffer from fatiguing, psychiatric, psychological and other conditions, – with the aim of burying the neuroimmune disease ME. Then, accuse #pwME of somaticizing and catastrophizing. 
  • Quieting criticism by spreading rumors that the patients are an “angry and crazy” group –  rumors that are never substantiated with evidence – to legitimize their own biased objectives and to dissuade clinicians and researchers from treating patients and studying the disease.
  • Media articles that miseducate about the disease and misrepresent the community such as this article in the Guardian titled “Chronic fatigue syndrome researchers face death threats from militants.” The author uses classic astroturfing methods when writing: “In addition, activists – who attack scientists who suggest the syndrome has any kind of psychological association – have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists’ behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.”  Notice the inflammatory language: “attack” – for disagreeing; “bombarded” – for requesting information from the government as if that is a terrorist act; “falsely alleging” – when there is actual evidence.
  • Mis-educating by highlighting the ‘fatigue’ element of the disease (even though it is just one symptom of many in this systemic disease).  Choosing to educate the misconception that this is a condition of the mind even though science proves otherwise. Encouraging harmful treatments such as GET and CBT which still appear on CDC’s website (see toolkit and guide to medical professionals) Educating with overly broad, inaccurate criteria as in the revised CDC website promoting the IOM criteria.  (See “CDC’s Website Revision is No Reason for Celebration”)
  • Marginalizing or disparaging clinicians and researchers who show interest in treating or studying the disease, by denying their applications for government funding and refusing their requests to serve on federal committees. Dr. Jose Montoya, a professor at Stanford University and one of the leading ME clinicians and researchers today, told The Guardian what his mentor told him when starting his work with ME patients:  “You are committing academic suicide. You’re turning your career into a mess.”  
  • Giving the illusion that patients have a platform for input and engagement when in reality their voice is consistently ignored.  HHS creates puppet committees and working groups, such as the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and various working groups yet, very few (if any) of their members’ recommendations are implemented.  Stakeholders’ oral and written testimonies to CFSAC are sought but readily ignored and dismissed.
  • Threatening those who dare to ask critical questions – as in the threat of eviction of three CFSAC voting members – two of which went public – Eileen Holderman (patient advocate)and Dr. Mary Ann Fletcher (scientist) (See video here, letter from advocates calling for an investigation here).
  • Rewarding those who support the biased government agenda by giving them preferential treatments, whether with a coveted seat at the table or with funding opportunity perks.  Some in the co-opted interest groups aid the government with attempts to silence opposing voices by telling them not to complain and to ignore the malfeasance.
  • Rejecting grant applications to fund biomedical research, in deference to studies using a psychological/psychiatric view.  World renown ME investigators, such as Drs. Ronald Davis, Ian Lipkin, Nancy Klimas, Jose Montoya, Mark Davis and Robert Naviaux have each received rejections for their research grant applications from NIH. Yet, funding studies by Psychologist Fred Friedberg, Ph.D. such as home-based management are accepted (See study).

As currently seen with the University of Bristol Professor Esther Crawley’s upcoming TEDx talk “Dare to Disrupt”, the desire by these groups to propagate their false narrative about ME is powerful.  In her write up on TEDex website, Crawley writes: “I dare to disrupt because …We need to disrupt views of this illness.Those who are ill with CFS/ME do not have a voice – they are too unwell. We need to provide their voice, and we need to speak up about this illness. Because we, as a community, as a society, as friends, as neighbors and as parents should look after children who suffer.”

Yet, the ME community did not choose Crawley to be their voice.  The opposite is true. Esther Crawley is a proponent of the unscientific GET, CBT, and lightning process treatments in children with ME and is involved in studies using these harmful therapies.  She was an author on a study which promoted the diagnosis of pervasive refusal syndrome (PRS) for children with severe ME.  UK patients and advocates have spoken out against these studies taking place because of their potential for harm. Crawley fought back by using the astroturfing method of character assassination. She spread allegations that she was being attacked and harassed by ME patients.  These charges were debunked by Tyme Trust who obtained FOI requests from the University which revealed that no reports of harassment were made (See Adam Lowe’s article, “Esther Crawley claims harassment, university has no record”).

The nefarious methods of control by those with a false narrative about myalgic encephalomyelitis and their supporters will continue. To prevent the disappearing of ME, we need to recognize and expose these treacherous acts.  Our advocacy efforts should focus on demanding the use of proper criteria for diagnostic and research purposes ( ME-ICC criteria and ME-ICC Questionnaire), and for appropriate NIH funding ($250mil a year in the US) to effectuate impactful studies leading to an acceptable biomarker as well as FDA approved treatments for #pwME.

References:

Astroturf and manipulation of media messages | Sharyl Attkisson – video –https://www.youtube.com/watch?v=-bYAQ-ZZtEU&feature=youtu.be

Transcript of the Attkinson’s video – https://www.facebook.com/notes/anne-liconti/transcript-astroturf-and-manipulation-of-media-messages-sharyl-attkisson-tedxuni/10155251065525277?hc_location=ufi

Mongoven, Biscoe & Duchin: destroying tobacco control activism from the inside – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1763840/pdf/v011p00112.pdf