Maureen Hanson, PhD, and I wrote an op-ed for The Hill, a Washington, D.C. news publication. We emphasized the seriousness of ME and asked for meaningful Congressional funding. The Hill reaches 32 million people per month online, 19 million of them college educated, according to its media kit.
Such an important article! Thank you to both of you!
I'm 54 years down the line with ME and therefore I have been ill more than half a century longer than anyone who has Long Covid. I have thus far had no care specific to my disease. And yet I am looking at the 'euthanasia' 'option' simply because some very severe symptoms are timing me out. Hobson's choice (unless we can regard a possible 30 years of unbearable suffering a 'choice').
I'm still fighting knowing what the first line treatment option ought to be, given my (privately obtained) test results. But it's proving as elusive as will-o'-the-wisp.
But I'm no longer keeping such thoughts to my private social media and private conversations. People should know what is happening to those of us with ME.. actually happening.. and, as you say, the population generally simply doesn't realise that they are only one viral infection away from a life torn apart too. And we can thank many western governments for this inequity, particularly those of the US and the UK. The malign influence of Holmes and Kaplan and the CDC; the fakery of Beard and McEvedy, and the Wessley School (who get their rocks off gaslighting seriously ill people) in the UK.
People with ME are overdue for care, most of us will go to our graves without it. Unless things change. As scandals go, and we have seen plenty over the span of the last 54 years of my illness, this surely is the biggest of all?
All you say is so true. I agree that the time for self-censorship is over, to whatever degree people care to engage in speaking out about what has happened to them. And yes, the UK and the US federal health agencies have set influential policies relating to ME that reached around the globe and caused tremendous, needless suffering. I'm sorry for the duration of your ME. Few understand unless they've been there themselves.
Obviously a great deal of my background information wrt the politics and history of this disease come from you... I read OW in its original form whilst I was still able to read books... and still able to retain more information than I do now.
If patients' testimony is ever required in written form then I'm happy to help. I agree that these stories need to be 'out there'.
Great article and many thanks to you Hillary and Maureen for once again being our voice. One item I would like to add to the pleas for help in the future is the following: At least in my case, there is immune deficiency along with the chronic fatigue. In my mind the immune deficiency part of this illness is huge as the immune system can affect every aspect of our health. Dr. Paul Cheney and virologist Elaine DeFreitas recognized that this illness was similar to what was being seen in other HIV/AIDs patients. This should have been a show stopper. Because this disease is so easily transmissible, my guess is that they don't want to panic the public. Please continue to be our voice and please bring up the reality that this is an immune destroying illness. The public has a right to know.
And if I could add this: I have autoimmune markers & I have, just these last 3 years, found a really decent rheumatologist who recognises me as being genuinely ill. She admits she knows nothing about ME so she looks at me via the prism of her expertise, in her discipline, using her tests.
As well as that I belatedly accessed a punch biopsy (and my word it was hard to get in the UK.. why don't they want us to have this test.. is it because without it we can be gaslighted with impunity; given bogus 'FND' diagnoses??) and I am positive for Small Fibre Poly Neuropathy (SFPN). More recently still I had the Celltrend panel to look at anti GPCR AABs and I am positive for some of those. All put together that leads to a reasonable dx of "autoimmune dysautonomia". The question is whether that is a part of having ME per se (very possibly/ probably) or something else entirely?
My rheumatologist understands that my situation makes it reasonable to ask our NHS for funding for IVIG for me, a situation which a brand new ME doc is completely supportive of, but I will almost certainly be turned down for it.
So I agree. The immune aspect and how it interacts with both the peripheral and central nervous systems is surely the real nub of this disease? And it's that 'synergy' which is so very, very cruel in terms of how we experience this illness.
It is very important, as the article in The Hill demands, that we are funded as being ME patients who were ill before Covid. It's not fair that Covid is swallowing up the $$$, not when some of us have lost all our lives to this disease. I have never been a fully autonomous adult. Not because my intellect or my spirit is incapable, but because my physical health has precluded it. All the while being gaslighted and harmed by medics.
Thank you for your comment and you are not alone. I (and my husband) have had this illness for 11 years now and just last year, I was diagnosed with Myasthenia Gravis / Thymoma which is a rare autoimmune disease. I'm 100% positive this is a result of whatever pathogen/virus I was infected with back in 2013 (from saliva). I believe those with autoimmune diseases may actually have a form of ME/CFS and an underlying virus. It's a small miracle that Long Covid came along. I hope it opens the door for much more ME/CFS funding and awareness very SOON. Thanks to angels like Hillary and Maureen for exposing the topic.
Important point. As authors, we were under fairly rigid space constraints and had to condense so much information into what seemed like very few words. That said, there are tremendous immune system deficits and immune aberrations in ME. What you describe WAS a show stopper and it was at the heart of the story I told in Osler's Web in 1996. ME certainly may be called a disease of the immune system as well as a neurological disease and it probably can't be said enough. Next time!
Thank You Hillary and understood! I'm going to take your lead and do my part even if it's a tiny part. I'm going to send Senator Sanders a note with my back story and ask him to fund ME/CFS. It probably won't even get to him but it's worth a try. If everyone with this terrible disease sent him a note, maybe it would help him understand the depth of this problem.
I've worked in a Congressional office. Senators and representatives all employ staff who do read letters. Letters from constituents receive the greatest attention, quite naturally, but all letters are read by someone. If a member of Congress gets an unusually large collection of mail on one subject, the staff definitely communicates that to the member. If the mail is about a proposed bill, as in the case of Sen. Sanders, who invited public comment on the bill, again, it's likely all letters will be read with interest. Personal letters have more sway than individual names on petitions, though petitions are important, too.
Such an important article! Thank you to both of you!
I'm 54 years down the line with ME and therefore I have been ill more than half a century longer than anyone who has Long Covid. I have thus far had no care specific to my disease. And yet I am looking at the 'euthanasia' 'option' simply because some very severe symptoms are timing me out. Hobson's choice (unless we can regard a possible 30 years of unbearable suffering a 'choice').
I'm still fighting knowing what the first line treatment option ought to be, given my (privately obtained) test results. But it's proving as elusive as will-o'-the-wisp.
But I'm no longer keeping such thoughts to my private social media and private conversations. People should know what is happening to those of us with ME.. actually happening.. and, as you say, the population generally simply doesn't realise that they are only one viral infection away from a life torn apart too. And we can thank many western governments for this inequity, particularly those of the US and the UK. The malign influence of Holmes and Kaplan and the CDC; the fakery of Beard and McEvedy, and the Wessley School (who get their rocks off gaslighting seriously ill people) in the UK.
People with ME are overdue for care, most of us will go to our graves without it. Unless things change. As scandals go, and we have seen plenty over the span of the last 54 years of my illness, this surely is the biggest of all?
All you say is so true. I agree that the time for self-censorship is over, to whatever degree people care to engage in speaking out about what has happened to them. And yes, the UK and the US federal health agencies have set influential policies relating to ME that reached around the globe and caused tremendous, needless suffering. I'm sorry for the duration of your ME. Few understand unless they've been there themselves.
Thank you, that's very kind of you.
Obviously a great deal of my background information wrt the politics and history of this disease come from you... I read OW in its original form whilst I was still able to read books... and still able to retain more information than I do now.
If patients' testimony is ever required in written form then I'm happy to help. I agree that these stories need to be 'out there'.
Great article and many thanks to you Hillary and Maureen for once again being our voice. One item I would like to add to the pleas for help in the future is the following: At least in my case, there is immune deficiency along with the chronic fatigue. In my mind the immune deficiency part of this illness is huge as the immune system can affect every aspect of our health. Dr. Paul Cheney and virologist Elaine DeFreitas recognized that this illness was similar to what was being seen in other HIV/AIDs patients. This should have been a show stopper. Because this disease is so easily transmissible, my guess is that they don't want to panic the public. Please continue to be our voice and please bring up the reality that this is an immune destroying illness. The public has a right to know.
And if I could add this: I have autoimmune markers & I have, just these last 3 years, found a really decent rheumatologist who recognises me as being genuinely ill. She admits she knows nothing about ME so she looks at me via the prism of her expertise, in her discipline, using her tests.
As well as that I belatedly accessed a punch biopsy (and my word it was hard to get in the UK.. why don't they want us to have this test.. is it because without it we can be gaslighted with impunity; given bogus 'FND' diagnoses??) and I am positive for Small Fibre Poly Neuropathy (SFPN). More recently still I had the Celltrend panel to look at anti GPCR AABs and I am positive for some of those. All put together that leads to a reasonable dx of "autoimmune dysautonomia". The question is whether that is a part of having ME per se (very possibly/ probably) or something else entirely?
My rheumatologist understands that my situation makes it reasonable to ask our NHS for funding for IVIG for me, a situation which a brand new ME doc is completely supportive of, but I will almost certainly be turned down for it.
So I agree. The immune aspect and how it interacts with both the peripheral and central nervous systems is surely the real nub of this disease? And it's that 'synergy' which is so very, very cruel in terms of how we experience this illness.
It is very important, as the article in The Hill demands, that we are funded as being ME patients who were ill before Covid. It's not fair that Covid is swallowing up the $$$, not when some of us have lost all our lives to this disease. I have never been a fully autonomous adult. Not because my intellect or my spirit is incapable, but because my physical health has precluded it. All the while being gaslighted and harmed by medics.
Thank you for your comment and you are not alone. I (and my husband) have had this illness for 11 years now and just last year, I was diagnosed with Myasthenia Gravis / Thymoma which is a rare autoimmune disease. I'm 100% positive this is a result of whatever pathogen/virus I was infected with back in 2013 (from saliva). I believe those with autoimmune diseases may actually have a form of ME/CFS and an underlying virus. It's a small miracle that Long Covid came along. I hope it opens the door for much more ME/CFS funding and awareness very SOON. Thanks to angels like Hillary and Maureen for exposing the topic.
Important point. As authors, we were under fairly rigid space constraints and had to condense so much information into what seemed like very few words. That said, there are tremendous immune system deficits and immune aberrations in ME. What you describe WAS a show stopper and it was at the heart of the story I told in Osler's Web in 1996. ME certainly may be called a disease of the immune system as well as a neurological disease and it probably can't be said enough. Next time!
Thank You Hillary and understood! I'm going to take your lead and do my part even if it's a tiny part. I'm going to send Senator Sanders a note with my back story and ask him to fund ME/CFS. It probably won't even get to him but it's worth a try. If everyone with this terrible disease sent him a note, maybe it would help him understand the depth of this problem.
I've worked in a Congressional office. Senators and representatives all employ staff who do read letters. Letters from constituents receive the greatest attention, quite naturally, but all letters are read by someone. If a member of Congress gets an unusually large collection of mail on one subject, the staff definitely communicates that to the member. If the mail is about a proposed bill, as in the case of Sen. Sanders, who invited public comment on the bill, again, it's likely all letters will be read with interest. Personal letters have more sway than individual names on petitions, though petitions are important, too.