Congressman Jack Bergman becomes Champion for ME

rvallee

rvallee

Senior Member (Voting Rights)
Up with the Marines! We are so pleased that Congressman Jack Bergman (R, MI-1), a former Marine general, has become a champion for people with myalgic encephalomyelitis (ME).

Michigan advocates led by Lori Chapo-Kroger, RN, president of Pandora Org, and supported by the #MEAction Congressional team, did a video conference with Rep. Bergman several months ago. After listening to the advocates’ stories and being briefed on ME, Rep. Bergman said, “It sounds like life’s thrown all of you a curveball but you’re still swinging. I’ll be there swinging with you. Consider this a new chapter with me as your partner.” And, indeed, Rep. Bergman did what he said he’d do!
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https://www.meaction.net/2019/06/14/congressman-jack-bergman-becomes-champion-for-me/

Always good to thank those fighting for us. They are rare and appreciation always leads to more advocacy.
 
I sent this, in case it inspires anyone:
I am not a constituent, nor even American, but want to thank you for your efforts in pushing forward support for ME/CFS in Congress.

This is a worldwide human rights disaster and only the NIH and CDC have the institutional resources and capacity to make a difference. The impact of a paradigm shift will reach far beyond America's borders, freeing millions from the cruelty of lifelong disease and indefensible insult to injury.

There are millions of us, an estimated 20M, whose lives have been as effectively shut as if we had been wrongfully imprisoned for life. Most of us fell in our 20's, after significant public expenditures on infrastructure and the various resources that are required to raise a taxpaying adult. This money is currently wasted, as most of us cannot work and contribute to society. The net loss to the US economy is over $20B, amounting to well over $100B worldwide.

This is a grave injustice, on par with the AIDS crisis in its scale and cruelty, and those who will lead the way to a solution will be forever remembered for their courage. Medical institutions are currently unable to rise to the task, and so it falls on politicians to provide much-needed leadership.

Thank you for being part of the solution. Ron Davis is an impressive man, one of the foremost scientists of his generation, and we deserve a fair shot at giving the best of the best out there to solve this nightmare of a disease.
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I just emailed this ...
Dear Congressman Jack Bergman,

Sincere thanks for your integrity and guts to stand up for and stand by people with ME/CFS. Wonderful to see. It can be very hard to put one’s faith in politicians, and it is immensely heartening when it happens.

My wife has had ME for quite a long time now, and is mild/moderate, which means she can still do quite a bit, but much more slowly than she once could, and ends up completely shattered in doing so. Once upon a time she would have been able to do much more, much faster, and recover from it much quicker.

Sincerest thanks,

Barry [surname]
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I have emailed also -

Dear Congressman Bergen


I’m writing to thank you for your support for those with ME/CFS. As you will know this is a worldwide issue, and the US has taken a lead in its recent assessment of GET as being an ineffective treatment option for ME/CFS. Whilst we are not in the US, we hope that this decisive stance will be replicated elsewhere.


My daughter, now nearly 18, has had this illness since an episode of glandular fever aged 15. Once a straight A student with every option open to her, she now struggles to be out of bed for a few hours, or to read the books she once loved.

Life has been stolen from her, and unlike other conditions, her doctors have little knowledge of the condition: she has no treatment pathway, little medical support, and little understanding of her condition. Prognosis is better for teenagers and we hope that recovery/ improvement is possible for her.

She has no wish to be dependent on us, and yearns for the opportunity to achieve her hopes and dreams as any young person would.

We count ourselves fortunate as we have not been forced into inappropriate treatment, not had the threat of our child being removed ,nor been threatened with psychiatric treatment for a physical illness.


Hopefully, advocacy such as yours can help turn the tide on this devastating illness.


Many thanks for your support
 
A reminder:
Rule 12: No religion or non-ME politics
Religion and politics are inherently divisive subjects, with limited relevance to ME/CFS. ... Politics may be discussed strictly in the context of ME, but must still avoid any generalizations about members or supporters of political parties.
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Thanks for complying with the rule so the conversation is constructive.
 
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