Archive for May, 2016

Dear HealthCare Professional

We have seen all sorts of comments by healthcare professionals about patients with ME (myalgic encephalomyelitis) and what is “really” wrong with them.

These are just a few comments (and what is implied by those comments).

They just don’t want to work (they want to be on disability, they stand to gain from disability),

are bored (so they spend their time imagining symptoms),

can’t cope with everyday stress (they need psychological help),

don’t exercise (and are deconditioned),

are fat (and deconditioned),

don’t want to be responsible for themselves (they want to go on disability and live an easy life),

want stimulants, narcotics, etc (they are drugseekers),

want disabled parking tags (because disability is a perk).

 

Dear Healthcare Professionals,

Comments about patients with ME (myalgic encephalomyelitis) such as those made by healthcare professionals like you are painful. I hope this post helps you understand some of our pain and frustration.

My two young adult sons have ME which is a complex and challenging disease.

Both of my sons meet the IOM criteria (this link is to The Clinician’s Guide and you can access the full report ). They also meet the CCC criteria for ME.

One son suddenly became sick since he was 12 years old. He is in his early 20s now.

My other son gradually sick about 15 months later. He too is in his 20s.

Neither of my sons are/were lazy.

A few specifics about my sons.

One son taught himself to multiply before he went to kindergarten.

The other was reading middle school level books at age 5.

They were lively, curious, and fully engaged with life, family and friends.

At the time they got sick they were competitive swimmers, swimming upwards of 20 miles a week.

The sudden onset of one son’s illness rendered him housebound, unable to do schoolwork, inexplicably unable to do mental math that had been effortless for him at age 5, unable to socialize, unable to leave home for things other than medically related appointments. In other words – no fun.

My other son had a gradual onset and he too is housebound and partially bedbound, unable to retain what he reads, unable to socialize, unable to leave home for anything other than medically related appointments. In other words – no fun.

In the past 10+ years since they got sick my sons have diligently done everything suggested by healthcare professionals (including various specialists) – to little avail. Most medications we have tried have produced no benefit and few produce enough benefit to endure their adverse effects.

My sons have not been able to learn to drive – frequent, unexpected syncopal episodes, impaired decision-making, and slowed reaction times would make their safety and that of those around them a significant concern.

My sons’ limited capacity for (cognitive or physical) exertion is not a result of deconditioning.

For one son, the exertion intolerance (a hallmark of this disease) began quite abruptly with the sudden onset of his illness.

For my other son, the exertion intolerance and the disease revealed themselves more gradually.

And as I mentioned above, when they became ill, they were swimming at least 20 miles a week so they were in great physical shape. Therefore deconditioning is in no way an explanation of their exertion intolerance.

These days cognitive and or physical exertion in excess of the strict limits imposed by this horrible disease, produce a dramatic exacerbation of symptoms (post-exertional malaise or PEM) that can last for weeks and render my sons even more disabled than their baseline (which on a good day is about 30% of normal).

All too often I see comments by healthcare professionals saying these patients want stimulants, narcotics, Xanax, disability and disabled parking tags.

My sons take no stimulants (bad reactions to them), no narcotics, no Xanax, etc.

Neither of my sons want to use the disabled parking tag that we have – they don’t want to feel labeled by doing so. So we use the tag quite sparingly – but then again my sons are out of the house so rarely that any use is sparingly.

My sons don’t get SSDI (Social Security Disability) – they have never been able to work so therefore never accrued work credits to qualify for SSDI and having never worked, they never had the option of long-term disability insurance.

Since my sons’ illness onset and because they are so severely impaired by this disease, I have been their 24/7 unpaid caregiver.

There is NOTHING to gain for us with this disease and we do our best not to think about the significant losses (independence, educational aspirations, making a difference in the world, spontaneity, vacations, and on and on).

So you see, your comments about us are not accurate. Nor are they appropriate. And inaccurate, inappropriate, disparaging, and or demeaning comments such as yours cause significant pain and detract from your job which is to help patients.

We don’t need or deserve additional pain and or hardship in our lives.

In public and in private, we deserve respect, compassion, appropriate diagnoses and appropriate treatment. NOW!

Sincerely,

A parent of two patients with ME

May 12th is ME Awareness Day

#Millions Missing

Millions of people are missing from everyday life because of Millions Missing from research and Millions Missing of appropriately educated healthcare professionals to care for patients

The #Millions Missing demonstration will take place on 25 May 2016 in select locations across the globe.

#MillionsMissing ME/CFS Protest Demands

  1. Increased Funding and Program Investments

Funding and program investments commensurate with the disease burden

  1. Clinical Trials

Clinical trials to secure medical treatments for ME/CFS

  1. Accurate Medical Education

Replacement of misinformation with accurate medical education and clinical guidelines

  1. A Serious Commitment

HHS leadership, oversight and a serious commitment to urgently address ME/CFS

#MEAction has posted the rationale for the demands.

NOTE –

There is an open community meeting hosted by MEAction on

Wed. May 11th, 2-3:30 pm EDT

to discuss the demands and

hear any questions or concerns you have about them.

More info and call sign-up here:

 https://my.meaction.net/events/millionsmissing-national-call

MEAction says “We are thinking of these demands as a living document. We plan that after the protests (May 25) it will evolve as we get input from the community. MEAction.net will set up a mechanism for receiving that community input. This task, and the evolution of the demands document, will happen after the protests, simply because we lack the capacity to do it while we are organizing the protests.”

MillionsMissing graphic 1