19 Comments

1. 

   Lucie on April 22, 2019 at 6:09 pm

   Hi,
   Setting priorities…I am from Canada. Will the NHI “accept” answers that are not from residents of the USA ?

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     Cort Johnson on April 22, 2019 at 6:30 pm

     I’m sure they are. The NIH does not ask for address information – they seem to be just interested in ideas 🙂

     Reply
2. 

   Billie Abbott on April 22, 2019 at 7:47 pm

   I would suggest whatever trials or tests are being undertaken, that CFS/ME people
   are sure of a toxic, chemical free environment. So many have Multiple Chemical
   Sensitivity, and that alone would prevent them from participating. It is why many
   never call the ambulance and go to hospital.

   Reply
3. 

   Nikoli A."Penny" McCracken on April 22, 2019 at 10:27 pm

   I became ill in June, 1981, it took 5 years to get a diagnosis, and I was told often, that it was ‘all in my head.’ I’m a bit more assertive than many women, so I stuck to finding out what I had.
   I kept working for 9 more years, and it was a struggle. I finally had to give up and retire, after being hauled out of my aerospace job, for the SEVENTH time!
   I will be 81 in May. I have MD/FMS/MCS, and lots of allergies. I live in a pretty safe environment, a rural area in Nevada. My local doctor is well-versed regarding my illness, and does not thing I am faking anything. Our former Senator, Harry Reid, kept trying to get more research done. He got about $18.7M allocated to the CDC, and then raised holy Hell when he found out the then-new director of the CDC didn’t think our illness was ‘real’ so he directed the money to other research! And the money came back, a lot slower than it went out.
   I also have hypothyroidism, and only recently was I able to get a doctor to do the full spectrum of thyroid tests. I yelled and waved my arms for years, and each doctor ONLY did the TSH test. I was always told it was ‘on the low side of normal.’ It sure was!
   My husband left, a year after I became ill, I lost my career, one I loved at only 51 years old. I now live on not much, only Social Security. Fortunately, I don’t drink, smoke, do drugs or abuse my medications, and never have, so we can’t say any of that was the cause. I was fine one day, sick the next.

   I kept being told to do ‘graduated exercise.’ I’m a perfectionist, so I tried. I kept getting in a very painful state afterwards. Now, no power on Earth could make me exercise again. I still do swim, as we have an ‘Old Swimming hole’ that is 84 degrees all the time. But we can only swim during summer. I have achieved a modicum of comfort, but never feel entirely well. I can and do drive, but if I drive too long, my ankles swell. That’s about it. If I can answer any other questions, please contact me.

   Reply
4. 

   Elizabeth Kay on April 23, 2019 at 12:15 am

   As we know, there are so many, many, various combinations of symptoms among us in this ME population. I gather there will be professionals working on this who will want to establish some newer, specific diagnostic or descriptive criteria for ME. As with many conditions that receive scrutiny, new or “refined” criteria could tend to define — and re-define — who does and who doesn’t have CFS/ME.
   I suggest, when this comes up, to establish some kind of ME-A and ME-B perspective. This is because when a so-called authority defines some parameters, many patients could find themselves excluded from the new diagnostic criteria — despite those patients continuing to experience ME as we now know it in 2019 (or whenever). Yes, the current population of ME patients is quite a motley assortment of great variety. I suspect no two of us are alike! So I recommend for example, the spectrum of ME patients as we now know of ME could be described as ME-A (for All Across the spectrum), while patients described by a narrowed diagnostic criteria would be ME-B-_?_ (defined diagnostic criteria for the _Basis_ of a particular study). Because whatever diagnostic descriptions turn up, those of us who have ME – as we recognize it NOW – have it whether they include us in their “updated” diagnostics or not. Our motley assortment of variety across our ME population is as valid as can be.

   Reply
5. 

   Lenore Heiman on April 23, 2019 at 7:24 am

   I was diagnosed with CFS in 1991 by a Social Security doctor in Wisc. I received disability.(I was born and raised there)and in all these years, could not find doctors who knew a damn thing about this terrible disease because doctors are not taught in medical school about the symptoms or even how to do “eliminate” diagnosis. I have had a doctor that would help with some pain medication but, today they want to take that all away!! I cannot live with the horrible cancer-like pain!They don’t get how terrible it is! Without major pain meds I cannot move or do much of anything! I am in bed for many years I am so tired all the time. Oh, yes..I’m 71 yr. old grandma, am disgusted with dumb doctors, their excuses to not help me. Why do social security doctors know something and the rest of the country doesn’t???? help me… all of us, there are millions of us with cfs….

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     Cort Johnson on April 23, 2019 at 10:33 am

     Hi Lenore,

     Some ideas – LDN, CBD oil. medical marijuana – if you haven’t tried those. We have a cannabis series coming up shortly – it may provide some possibilities.

     Know also that the NIH’s Heal initiative hopes to provide the funding for 15 new pain drugs over the next five years. It’s an ambitious goal; if they succeed halfway that would be a big step forward.

     Reply
6. 

   Sura on April 23, 2019 at 7:26 am

   What do I suggest might help us?

   First figure out how much we are owed for decades of what many of us hope was unintentional (though mean-spirited) ignorance and abuse by HHS and The NIH which spread to private insurance and disability corporations which are required by law to meet the needs of their investors ahead of their customers. Perhaps the most egregious denials of coverage by privately funded organizations could be assessed fines to add to this project. We require an amount based on the estimated disease burden in reparations. This figure could be updated as more people living with ME/CFS are diagnosed. This should be regularly funded until our deficit is met, without the requirement to reapply from scratch each year:

   Second, create and open many more Centers of Excellence all over the country staffed by people in every medical field and discipline. (Neurology, Gastroenterology, Infectious Disease, Rheumatology, Dermatology, Dentistry, Physical & Occupational Therapy, Nursing, Complementary Medicine, Social Services, etc.) with both newly minted and experienced General Family Practitioners for oversight and referrals. I suggest funding via all of the Institutes mentioned in my sixth paragraph. Creating a new Institute just for us might limit options for adequate funding.

   Organize ‘Vista’ type programs within in every medical and related discipline to cover the loans and other validated educational debt of recent medical school graduates or indebted practicing physicians in exchange for working together and sharing research findings with each other at these COEs and the privately funded non-profit organizations which have been our only hope for these publicly underfunded decades. There should be publicly available clinics centrally located at each COE with experts in each discipline. Adequate and appropriate diagnosis and treatment should be offered to all who come, then help in applying for disability or other aid if needed. Medical, nursing and support staff (cleaning and food delivery) might also have access to dorms while in the program.

   Build clean, mold-free housing at or adjacent to these COE’s for those of us who have become homeless due to decades of neglect and the systemic abuse of our community. The most severely affected may need special sound and light free accommodations. Many of us who are still only mildly or moderately ill might volunteer for the least invasive, most ethically scrutinized research projects and very carefully arranged drug trials – exceeding all Helsinki Protocol requirements. There should be no pressure to volunteer, as this would be stressful. These requirements must be powerfully overseen. Such communities might gather a willing ME/CFS cohort for research more available as travel would not be required.

   Those of us with financial resources, private insurance or Medicare/Medicaid could be billed for clinical care (whether living within the Center or having traveled to get there). Each facility would need a centralized active social services department to help with disability applications and the requirements of living, daily delivery of wholesome organic food based on the requirements of each person with ME/CFS, nursing staff to bring and infuse IV Saline or IVIG or whatever the on-site clinicians prescribe. We MUST be permitted to reject any suggestion we deem inappropriate without being labeled non-compliant. Should a cure be devised or found in something already extant, we should be helped toward our previous independence and these centers can then be expanded to include other illnesses that our research might help or have already helped to inform.

   Although we each have our own version of this illness, our shared co-morbidities include elements that might be investigated under several NIH Institutes’ umbrellas AND SHARED with each other. (I’ll put some of my possibly unique experiences in parenthetic notes):
   NHLBI: There’s something going on that shows up in our blood and/or plasma and our red blood cells tend to be deformed;
   NHGRI: We’ve seen evidence that some versions run in families, so there might be a genetic predisposition after one or some combination of stressors;
   NIAMS: Many started having symptoms after a bout with an infectious disease & a high percentage of us have had allergies since childhood and have developed allergies and/or sensitivities to the drugs we’ve been given to address individual symptoms;
   NIAMS: Rashes and the odd auto-immune reactions to stressors (Note: when I developed alopecia areata after a particularly stressful cataract surgery, I was treated by Dermatologists who also diagnosed the hidradentis suppurativa that had haunted me for decades following the birth of my oldest son);
   NIBIB: for the advanced equipment required to see what Jarred Younger, Michael VanElzakker, David Systrom, etc. have noticed about our brains, Vegas Nerve system and PEM;
   NIDCR: To incorporate information and suggestions for treating our shared incidence of TMJ (Note: I was very lucky that a Dentist I saw while in NY taking care of my mother happened to be a noted Dental Anesthesiologist who treated both my TMJ and the painful ulcers I get on one – OR the other, never both – side of my hard palate before a flare);
   NIEHS: for those of us whose illness started with or was exacerbated by mold or environmental toxins…
   NIGMS: To organize and evaluate what is learned within other specialties;
   NINDS: covering the brain and nervous system which is the Institute within which some already believe we should be (although we are STILL not included under their A-Z lists under any name) and (Note, because my son’s version included Epilepsy at age 26 following a cerebral hemorrhage at age 10 with such unusually intense muscle spasms that each seizure is followed by life-threatening bouts of Rhabdomyolysis);
   NCCIH: in case they can find interim solutions while the other Centers search for cures;
   NINR: to educate Nurses about our illness, especially school nurses and those in rehabilitation facilities to recognize and care for our shared and individual needs – like administration of IV Saline infusions, which address the low blood volume that can impact our quality of life and/or IVIG infusions which also help many of us.
   HHS’s Office on Women’s Health is still the only Department I could find (other than the CDC) that lists our illness and it has always functioned with very limited resources.

   I’d also suggest that EVERY individual Medical Specialty create a Continuing Medical Education (CME) program, perhaps using Jennifer Brea’s ‘UNREST’ and/or Ryan Prior’s ‘Forgotten Plague’ (not the one with the same name about Tuberculosis) with questions that must be answered accurately before credits are issued. All medical and adjunct specialty practitioners need re-certification every few years and if a decent number of credits could be offered that would aid in spreading awareness of the reality of ME/CFS as well as the stigma most of us have endured. There are few ME/CFS specialists in the country and those we have are aging, many have already retired. We are too ill to travel to get diagnosed, our cognitive issues impede or halt our attempts to organize appeals for any of the help we need. This has meant that most of us get no help or support at all. We are still disbelieved by most doctors in this country and stigmatized and labeled non-compliant when we drop out of the Physical Therapy facilities or pain clinics we’ve been forced to attend when the GET they insist we try worsens our condition forever (Note: the very mild warm water AquaTherapy I engaged in twice a week for less than a month in the mid-1990s moved my Fibromyalgia while I could still work, to full blown ME/CFS).

   Because of mis- and dis-information, some spread by our own CDC, and the stigma still rampant in every medical discipline, we have lost spouses, connections with family and friends, even the religious organizations that might help their own members in need, had to sell our homes, then become unable to cover rent in a downsized apartment. (There are several members of the peer-to-peer phone support group I call into on the Saturday nights I am well enough to listen who are about to lose their home or apartment and don’t own a car they can sleep in.) We do not do well in shelters. We need clean, mold free environments. Though we often feel isolated, interacting with others is stressful and exacerbates our illness. Each COE should also offer free internet access, phones and television for those residents who can bear them as well as a meeting place for those mildly and moderately affected to meet.

   What we hear is that we should be grateful that the NIH is funding 3 Centers of Excellence for the research for which we (and CFSAC, now defunct) have begged for decades. The combination of stigma, no source of support and no appropriate options for survival, it shouldn’t surprise anyone that some of us lose hope and either just wither and die in place or commit suicide.

   No one told any of us that we should have applied for Disability as soon as we began to become disabled, instead of cutting our hours over the years and working part-time, then less for many more years until we could no longer work at all and lost our jobs; this limited the amounts in the working quarters that are considered when applying for any of the programs that help the disabled as well as for Social Security when the time comes. Many of us worked at well-paying jobs for decades, but lost any benefit from those years because of having had to cut our hours and then find work we could do while cognitively and physically impaired. Our system is not set up for people with our version of increasing disability. Social services, once we’ve lost our jobs and our housing are equally uninformed and put off by our inability to describe or organize our work and medical history and condition by the time we first apply for help.

   So there we are, isolated, often in great pain, still disbelieved and often dropped from the practices of the few doctors who accept Medicare and/or Medicaid for those of us lucky enough and in good enough shape to be able to apply for such help or food stamps with our increasing disability – or to respond to the automatic cutting of those benefits to amounts on which no human can survive.

   I read (in a recent Forbes article) that if we’ve been seen upright or temporarily able to function in a picture on social media, our government plans to cut us from any aid or help we have in place. Our illness sometimes waxes and wanes. It can take weeks or months to prepare, then recover from a trip to a grocery store or a doctor.

   I’ve probably left many ideas out of this post. I used to be a fine editor; am now unable to edit my own writing. Alas. Y’all have my most sincere apology for the length of this thing.

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   • 

     Cort Johnson on April 23, 2019 at 10:35 am

     Well the floodgates opened – as they did for me :). That disability issue is really something. I don’t think many people know NOT to go part-time….

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       cdax on April 25, 2019 at 7:14 am

       I have to say I was extremely fortunate in one respect when I first became disabled with CFS — I could not persuade my doctor to approve part-time work, and my company then (failed during the 2008 financial crisis) had a great Human Resources director who pushed me into applying for longterm disability. We had a number of people out on disability from my company – it was notable what an issue it was — I was the only one with CFS but others had various immune and rheumatological problems. I was told by someone there our building was what was then called “a sick building.” I never hear that expression anymore, but maybe because I’m not functioning in tall sealed buildings anymore.
       In other respects, all these comments I’m hearing from people are so, so familiar. Very many are extremely articulate. If these comments could be gathered and published in someone’s prestigious college alumnae/i magazine? Maybe that would help raise some more interest, legitimacy and support? It’s really hard to try to do it one by one.

       Reply
7. 

   Cort Johnson on April 23, 2019 at 10:54 am

   I got this in an email. I hope it’s all right to print – It was prompted by this situation:

   I went to (a university) to find a new doctor since I can’t travel, and met with intense hostility .Dr. X (name removed) told me “I will not treat you for a chronic fatigue syndrome now or in the future and neither will anybody in the department that I run”.

   Wow….

   She wrote:

   “I wish there were a way for a patient to request a letter from NIH and the other researchers involved that would be sent directly from NIH to a doctor who dismissed and refused to treat the patient.

   I am imagining a letter that states that me/CFS is a dangerous autoimmune neuromuscular disease, an acquired mitochondrial disease, more disabling than MS. there are treatments that can help now and research is looking very promising for curative treatments . That neuromuscular medicine is an appropriate place to treat these patients and the physician should learn more about it through these resources.

   That the doctor is receiving this letter because they have dismissed a patient with the serious disease. And that they should please reconsider. That me/CFS is in no way caused by a psychological problem. Cognitive therapy does not treat it, and exercise therapy is very dangerous for me/CFS and can leave the patient much weaker, homebound , bedbound or even kill them.

   The hallmark of me/CFS is postexertional malaise (PEM) , a flulike reaction to exercise and activity, that causes great fatigue,muscle and nerve inflammation, severe headache, and makes the patient much weaker . It may take days to weeks to recover, and if the recovery isn’t short, it often results in permanent progressive weakness . Hence the patients exercise themselves into being completely disabled if they have the misfortune to be given this bad advice.

   Then the statement that , “you are receiving this letter because a.patient has told us that you dismissed them and refused to treat them for the disease. We ask you to reconsider, and learn about this disease. Critically, if you have given other patients this advice to exercise if they have chronic fatigue syndrome symptoms, we urge you to contact them and tell them of the danger of the exercise advice if they have the postexertional malaise reaction.”

   Honestly, if Dr. “X” ever got a letter like that from NIH , he would probably change his tune . Although he was so horrible to me, I would probably insist on a different doctor than him. Still he is the head of the department , and being put on notice like that might break things open there .”

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8. 

   treesha on April 23, 2019 at 11:42 am

   Well here is my 2 cents…..
   question:
   Approaches to reduce barriers that prevent individuals with ME/CFS from participating in research. For example, these might be logistical challenges, such as difficulty traveling to a study site, or might be because of an unwillingness to undergo certain types of research protocols.
   hmmm, that felt like the same old same old
   answer:
   I would change that question to say patients might have an INABILITY to undergo certain types of research protocols. I for one am not unwilling to travel afar and participate in a two day exercise challenge for the cause and to learn about myself, but I am completely UNABLE to do that because of the potentially devastating effects it could have on my health short term and possibly long term if my reaction is bad enough. That knowledge of my body and its limits does not represent an UNWILLINGNESS, it represents INABILITY. The use of the term “unwillingness” makes it sound like my decision is solely based on my will….If my will was the only factor, I would be healthy. Would you describe a person with only one hand unwilling to clap? It is just as impossible for people with moderate to severe ME/CFS to participate in some of the more strenuous thing like travel, and exercise and for some trying to maintain, they don’t want to get worse. So please, don’t call it unwilling.

   and on a lighter note
   question:
   Other approaches that may improve the overall field of ME/CFS research.
   answer:
   Get rid of the quacks that publish nonsense

   i guess that was 4 cents

   Reply
9. 

   Cort Johnson on April 23, 2019 at 12:29 pm

   Here’s one from G H

   Please provide your perspective on any or all of the following issues related to the Working Group’s charge:

   The most compelling ME/CFS research needs.

   debilitating brain fog / inflammation / pressure
   and / or identify a biomarker – to advance the research and quiet the negative ME illness image

   Strategies for overcoming scientific challenges or barriers to progress in ME/CFS research.

   possibly partner with other similar brain health illnesses / research (at least for a portion of the effort / budget)

   Potential research resources, tools, and/or materials that could help advance ME/CFS research or enable early career investigators and senior investigators new to the ME/CFS field to more easily conduct research.

   push the 5 year NIH study results to close and publish them!

   Relevant considerations and strategies for clinical ME/CFS research, including the development and validation of data standards and outcome measures.

   Copy whatever was successful for Parkinsons, HIV, MS

   Overcoming challenges or barriers to establishing a career in ME/CFS research for early career investigators and those new to the field.

   See all of the above – include a small bit of funding to aid showing Unrest at colleges et al.

   Approaches to strengthen research and career training for ME/CFS investigators.

   See all of the above – include a small bit of funding to aid showing Unrest at colleges et al.

   Identifying related scientific areas that may be relevant to ME/CFS and strategies for establishing collaborations with experts in those areas to help advance ME/CFS research.

   (See above) possibly partner with other similar brain health illnesses / research (at least for a portion of the effort / budget)
   Tag a small portion of the budget for identifying cross / co- research partners.

   Approaches to reduce barriers that prevent individuals with ME/CFS from participating in research. For example, these might be logistical challenges, such as difficulty traveling to a study site, or might be because of an unwillingness to undergo certain types of research protocols.

   How was this overcome for Parkinsons, HIV, MS….

   Design studies that allow for remote participation / sample collection e.g., blood collection, MRI, et al. (incentivize Lab Corp, Quest, medical Universities)

   Strategies for increasing ME/CFS research collaboration and communication between relevant stakeholders.

   How was this overcome for Parkinsons, HIV, MS….

   Other approaches that may improve the overall field of ME/CFS research.

   Don’t re-invent the wheel – How was this overcome for Parkinsons, HIV, MS….

   Reply
10. 

    AuntTammie on April 23, 2019 at 5:17 pm

    woudl be nice if there were a way to save this survey & take as much time as we need to answer it….barring that, patients need to review all the questions before answering, as we may have better answers to some than others & might need to prioritize those…..for instance, the one re how to help with barriers to research participation by patients is one that we definitely need to answer, but by the time I got there, I had zero brain power left & this one would have been a no-brainer if I had tried to answer it first

    Reply
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      ManShadow on April 23, 2019 at 5:46 pm

      I started my reply 24 hours ago, came back to it today. My laptop was in sleep mode since yesterday so the internet browser window didn’t close down, so the answers I added yesterday were still there this morning.
      So, if you have sleep mode on your computer, just use that. If using a phone or tablet, just leave the survey page open and your data should be retained for as long as you need to complete the survey.

      Reply
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      cdax on April 25, 2019 at 7:21 am

      AuntTammie I couldn’t agree with you more! I’m struggling to see how I’m going to try to respond myself to this survey, plus hopefully find at least one friend or family member to do so too, by May 1! There seems to be a disregard for the very issues that the patient population they’re addressing face in giving such a short amount of time especially to respond to such a substantive form.

      Reply
11. 

    Cort Johnson on April 24, 2019 at 11:19 am

    Check out the amazing job ME Action did (34 pages!) https://www.meaction.net/wp-content/uploads/2019/04/NANDS-RFI-Response_MEAction-Public-Draft_04242019.pdf

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      cdax on April 25, 2019 at 7:23 am

      This ref is so helpful, Cort — thank you!

      Reply
      • 

        Cort Johnson on April 25, 2019 at 1:46 pm

        🙂

        Reply