ME/CFS & Therapy: Parent-Doctor Conflicts

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ME/CFS Treatment Sparks Conflict: Are Children At risk?

A Growing Number Of Parents Of Children With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a debilitating condition characterized by profound exhaustion, are finding themselves at odds with medical professionals. The Core Of the Conflict? disagreement Over The Appropriateness And Effectiveness Of Specific Behavioral Therapies Recommended For Their Children.

Reports indicate A Rising Tide Of Concern Among Scientists Regarding These Treatments, With Some Suggesting They May Cause More Harm Than Good. This Controversy Raises Critical Questions About the Best Approach To Care For Young Patients Suffering From ME/CFS.

The Mother Of ME/CFS Patient Tessa Also Clashed With Doctors About The Treatment.

The Patient experience

Arlette Poolen, Now 31, Experienced This Conflict Firsthand As A 15-Year-Old. She Underwent Therapy Designed To Teach Children With ME/CFS To Disregard Their Body’s Warning Signals Indicating The Need for Rest And Reduced Activity.

This Approach, Rooted in The Belief That ME/CFS Is Maintained By Psychological Rather Than Physical Factors, Encourages Patients To Push Through Fatigue. The Treatment Involves Gradually Increasing Physical Activity Despite The Presence Of exhaustion Signals.

“I couldn’t Think: I Am In pain Or I Am tired,” Arlette Recalls. Forced To Engage In Daily Walks Of Increasing Duration, She Found Her Condition Worsening. “But I Was 15, So I Thought: the Doctor Will Know What He Is Talking About.” Today, Sixteen Years Later, Arlette Relies On An Electric Wheelchair For mobility.

surprisingly, The Form Of Behavioral Therapy Arlette Underwent Remains The Primary Treatment Recommended For Children With ME/CFS In Current Medical Guidelines.

Safe Home Concerns

The Coronapandemie And The Emergence Of Long Covid, Which Shares Similarities With ME/CFS, Has Increased Awareness Of the Potential Risks Associated With Such Therapy. Consequently, Parents Of Children With ME/CFS are Increasingly Challenging Doctors’ Recommendations, Sometimes With Serious Repercussions.

If Doctors Believe Parents Are Denying Necessary Care, They May File A Report With Child Protective Services, possibly Leading To The Child’s Removal From The Home.

According To A Survey By The ME/CFS Association, A Significant Number Of Families Have Faced Pressure From Medical And educational Professionals To Pursue recovery Programs They Believe Are Detrimental To Their Children. The Survey Revealed That 166 Out Of 250 Families Reported Experiencing Such Pressure. In 35 Cases, Authorities Threatened Intervention, And In 26 Cases, A Report Was actually Filed.

While The survey’s Findings Are Not Representative Of The Entire ME/CFS Population, Alfons Olde Loohuis, an Expert In Chronic Infectious Diseases At C-Support, Confirms That this Is A Recognized Issue. He Notes That He Has Often Mediated Disputes Involving parents Of Children With Long Covid, Were Unsubstantiated Reports Were Made To Veilig Thuis (Safe Home), The Dutch National Child Protection Agency.

A Mother’s Dilemma

Maike Verhagen, The Mother Of Kian, Encountered Similar Challenges In 2020. Initially, She Believed That Encouraging Her Then 10-Year-old Son, Who Suffers From ME/CFS, To “Just Bite” Would Be Beneficial.

She Organized outings And Sent Kian To School For Half Days. However, she Witnessed A Decline In His Health As A Result Of These efforts.Despite This, Doctors Advocated For Kian To Be “Reactivated” And “Resocialized” As Quickly As Possible, Citing Concerns About His Progress. Their Recommended Treatment Plan Involved Admission To A Rehabilitation Center For intensive Behavioral Therapy With A Strict Exercise Schedule.

verhagen, Armed With Knowlege About ME/CFS And The Risks Of Such Treatment, Raised Her Concerns. According To Verhagen, “one Of Our Doctors Warned Me After A Telephone Conversation With The Pediatrician That I Really Had To Cooperate Better And Keep My Mouth Shut, As Or else There Would Be A Safe Home Report.”

following This Threat, Verhagen Agreed To at-Home rehabilitation.However, She Found That kian Was Still Being Pushed Beyond His limits. Despite Her Efforts, His Condition Deteriorated. Eventually, With The Assistance Of the Intensive Child Care Interest Association, Verhagen was Able To Find A Doctor Who Adopted A Different Approach.

Kian Now Receives Adequate Rest And Appropriate Medication. He Attends School On An Adapted Schedule, With A Bed available For Him To Rest When Needed. “No Psychologist Was Involved,” Verhagen Emphasizes.

Official Response

Veilig Thuis States That A Parent’s Refusal To Pursue A Particular Treatment For ME/CFS Does Not Automatically Constitute Grounds For Child Abuse Examination.”it Is Crucial That Parents Can Properly Substantiate Their Choices And That The Well-Being Of The Child Remains Central,” The Agency Said In A Statement.

however, Guidelines For Pediatricians State That “If It Is Not Possible To Arrive At A Shared Treatment Concept And There Is An Endangered Development”, There May Be A Need For A Report At Veilig Thuis.

Did You Know?

According To A 2024 Report By The Institute Of Medicine,ME/CFS Affects Between 836,000 and 2.5 Million Americans, Many Of Whom Are Children And Adolescents.

Understanding ME/CFS And Treatment options

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Is A Complex, Chronic Illness Characterized By Persistent And Debilitating fatigue That Is Not Relieved By Rest. Other Symptoms May Include Post-Exertional Malaise (PEM), Cognitive Impairment, Sleep Disturbances, And Pain.

there Is No Known Cure For ME/CFS, And Treatment Focuses On Managing Symptoms and Improving Quality Of Life. While Behavioral Therapies, Such As Cognitive Behavioral Therapy (CBT) And Graded Exercise Therapy (GET), Have Historically Been Used, Their Effectiveness And Safety Are Increasingly being Questioned.

Pro tip:

Parents Of Children with ME/CFS Should Work Closely With A Multidisciplinary Team Of healthcare Professionals, Including A Physician Experienced In Treating ME/CFS, A Physical Therapist, And A Psychologist Or Counselor.Shared Decision-Making Is Crucial To Ensure The Treatment Plan Aligns With The Child’s Individual Needs And Preferences.

What specific strategies can parents employ to effectively document their child’s ME/CFS symptoms and limitations in a way that resonates with healthcare providers unfamiliar with the condition?

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ME/CFS & Therapy: Navigating Parent-Doctor Conflicts

Understanding the Root of the Conflict in ME/CFS

When a child receives a diagnosis of myalgic Encephalomyelitis/chronic Fatigue Syndrome (ME/CFS), it often triggers a complex dynamic between parents and healthcare providers. This is frequently due to the historically controversial nature of the illness, a lack of widespread understanding of ME/CFS symptoms, and differing perspectives on appropriate treatment. Parents,witnessing their child’s suffering,often become fierce advocates,while doctors may be constrained by conventional medical models and limited research. This can lead to frustrating ME/CFS advocacy challenges.

Common Areas of Disagreement

• Pacing & Activity Management: Parents may feel doctors aren’t adequately supporting the need for strict pacing, pushing for “graded exercise therapy” (GET) which is now largely discouraged due to potential harm.
• Symptom validity: historically, ME/CFS symptoms have been dismissed as psychological. Parents frequently enough struggle to have their child’s physical suffering validated.
• Treatment Approaches: There’s no cure for ME/CFS, and treatment focuses on symptom management. Disagreements can arise over the use of medications, supplements, or alternative therapies.
• School Accommodations: Securing appropriate educational support (reduced schedules, home tutoring) can be a major battleground.

The Impact of Misinformation & Historical Context

the history of ME/CFS is riddled with misinformation and stigma. Early research frequently enough framed the illness as a psychological disorder, leading to treatments like Cognitive Behavioral Therapy (CBT) focused on “accepting” the illness rather than addressing the underlying physiological dysfunction. While CBT can be helpful for *coping* with ME/CFS, it’s not a cure and shouldn’t be presented as such. this historical context fuels parent-doctor conflicts, as parents may be wary of approaches that minimize their child’s physical experience. Understanding the evolution of ME/CFS research is crucial.

Strategies for Effective Communication

Open and respectful communication is paramount. Here’s how parents can navigate these challenging conversations:

1. Prepare in Advance: Document your child’s symptoms, their impact on daily life, and any previous treatments attempted.Bring a detailed symptom journal.
2. Focus on Observable Facts: Instead of saying “My child is always tired,” say “My child has been unable to attend school for more than two hours a day for the past month due to post-exertional malaise.”
3. Ask Clarifying Questions: “Can you explain why you recommend this treatment, given the current research on ME/CFS?”
4. Be Assertive, Not Aggressive: Express your concerns calmly and respectfully, but don’t be afraid to advocate for your child’s needs.
5. Bring a Support Person: Having another adult present can provide emotional support and help you remember key points.

Finding Supportive Healthcare Professionals

Not all doctors are informed about ME/CFS. Seeking out healthcare providers with specific experience in this area is vital.

Treatment Approach	Description	Potential Benefits	Potential Risks

Resource	Description	Link
Solve ME/CFS Initiative	Directory of ME/CFS specialists.	https://solvecfs.org/find-a-doctor/
Bat Foundation	Resources and a physician referral network.	https://batfoundation.org/
ME/CFS Alert	Information and advocacy resources.	https://me-cfsalert.org/

The Role of Multidisciplinary Care

Effective ME/CFS treatment frequently enough requires a team approach. This may include a primary care physician, neurologist, pain specialist, physical therapist (focused on gentle movement and pacing), and a mental health professional experienced in chronic illness.

Addressing School-Related Conflicts

School accommodations are crucial for children with ME/CFS. Parents may encounter resistance from school administrators who are unfamiliar with the illness.

• 504 Plan or IEP: Work with the school to develop a 504 plan (for accommodations) or an Individualized Education Program (IEP) if your child requires specialized instruction.
• Medical Documentation: Provide detailed medical documentation from your child’s doctor outlining their limitations and necessary accommodations.
• Advocate for Versatility: Be prepared to negotiate and advocate for your child’s needs,such as reduced course loads,flexible deadlines,and access to online learning.

Real-World Example: Sarah’s Story

Sarah, a 15-year-old with ME/CFS, struggled to convince her school to allow her to attend only half-days. Her mother, Emily, faced repeated pushback from the school counselor, who believed Sarah was simply avoiding school. Emily persevered, providing detailed medical documentation and advocating for a 504