The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain. Even the much acclaimed 2015 re-invigoration of ME/CFS research simply returned the NIH’s financial commitment to ME/CFS to around what it had been ten years earlier.
How ironic, then, to find possibly the most potentially effective opportunity for change in years to come from within the agency. This effort – a report on the need for an ME/CFS research strategy – was initiated by National Institute of Neurological Disorders and Stroke (NINDS) Director Walter Koroshetz and NINDS liaison to ME/CFS Vicky Whittemore. (Whittemore also runs the Trans-NIH Working Group for ME/CFS which facilitates ME/CFS activities at the NIH.)
It generated little fanfare in the patient community, and the recent vote to approve the report got little notice. Time will tell, but it’s possible that vote has begun a process which will ultimately result in sweeping changes for ME/CFS at the NIH.
Council Presentation
One year to the day of the Report’s initiation, Stephen Roberds, the Chair of the ME/CFS Working Group and an NANDSC Council member, stepped up before the National Advisory Council (NANDSC), the Council through which all NINDS grants, initiatives and projects must pass. Before becoming the group’s chair, Roberds knew nothing about chronic fatigue syndrome (ME/CFS), but a year working on the report has convinced him it is a serious and neglected disease.
The NANDS Council Working Group Report on ME/CFS research took a year to produce.
The report was put together by 15 people, most of whom are ME/CFS experts. One of the members, Sadie Whittaker from Solve ME, called working on the report one of her best experiences in government. The members, she reported, worked efficiently and enthusiastically on it.
Roberds emphasized that if any disease called out for a strategic, organized approach, ME/CFS did. After almost 40 years of pitiful funding, no major pathological pathways had been agreed on and basic questions remained unanswered. The inability of the research world to provide even basic answers to the disease was in itself holding the disease back – as it left researchers without a clear path.
Despite the fact that ME/CFS affects at least a million people in the U.S., a startlingly high percentage (25%) of whom are home or bedbound, Roberds said he knew of many rare diseases which were getting more funding. When funding was being provided, most of it went to the same cadre of researchers – indicating a dire need to bring more new blood in.
By the time Roberds was done, he had really got the attention of some people on the council. Vicky Whittemore, the NINDS liaison to ME/CFS and leader of the Trans-NIH Working Group, said several of the NANDSC Council members told her afterwards they had no idea ME/CFS was so underfunded, that so little research had been done, and that such big needs were present.
Vicky Whittemore
“I’m excited about the opportunities.” Vicky Whittemore
Will this turn out to be a pivotal moment for ME/CFS?
The vote – a unanimous one – to approve the “Report of the NANDS Council Working Group for ME/CFS Research” passed with little fanfare. Vicky Whittemore in the back of the room – who had worked on it for a year – was mostly expressionless. (She said she was jumping up and down inside.)
It seemed almost anticlimactic. We’d heard little regarding the vote beforehand and no money was committed, but it’s possible something fundamental at the NIH has changed. I asked Vicky if the vote might be a pivotal moment for ME/CFS. She thinks it is.
I do too. Advocacy organizations and program staff members at the NIH have been asking for more money for decades – and it hasn’t gotten us very far – probably for one very basic reason. Neither outside groups nor the program staff at the NIH had the oomph to really move things forward.
This report very well might. Two other NIH-initiated reports (IOM/P2P), after all, got us three research centers and a big intramural NIH study. Now we have another NIH-initiated, vetted and approved report to use – a report which Vicky said gives her and the NIH something solid to act upon.
Producing reports is, after all, how things generally get done at the NIH. The NIH brings experts together to produce a report which recommends actions, and then it acts. ME/CFS needs that NIH-initiated stamp of legitimacy to move forward, and now it has it.
An NIH-produced strategic plan to move ME/CFS forward is what comes next. The big asks – for more funding, etc. – will come out of that plan.
Step-by-Step Process
Vicky said she and Dr. Koroshetz knew where they wanted to get to; the goal was figuring out how to get there. The process they used appears to be somewhat similar to what Emily Taylor and Solve ME are using with Congress and the NIH. Basically, it requires taking the necessary steps to build agreement within the system and THEN making the big ask. Both recognize the complex institutional barriers facing ME/CFS and are working on long-term plans to move ME/CFS forward.
Getting Congress to lean on the NIH, for instance, something it is generally reluctant to do, requires building support first to the point where a bigger ask can legitimately be made, and that requires taking a bunch of intermediate steps first.
Similarly, Koroshetz and Whittemore hit on a two-step plan to produce a strategy that hopefully will ultimately open the way up for more funding. The approval of the NANDSC report got NINDS to agree to the production of a strategic research plan for ME/CFS.
Among other things, by approving the report, the NANDSC Council agreed that:
- A lack of knowledge exists regarding the underlying biological mechanisms of ME/CFS
- Insufficient information exists about clinical aspects of the disease
- That the numbers of investigators and grant applications are too low
- That this disease needs many more “early career” investigators
- That the stigma that is still hampering ME/CFS at the NIH needs to be addressed
- That the field is lacking and that a strategic research approach to ME/CFS at the NIH (and elsewhere) is needed.
All these things have been said before in spades by advocates and ME/CFS organizations, but the difference is that this time it’s the NIH saying that – and while it doesn’t immediately provide more funding, it certainly opens the door to that. The Council approval laid the foundation for a more powerful and difficult-to-ignore request from within the NH for more resources for ME/CFS.
Actionable Report
NINDS Director Walter Koroshetz and Vicky Whittemore initiated the report.
The approval of the report will give Vicky, the Trans-NIH ME/CFS Working Group and their partners (us) access to a bevy of resources they didn’t have access to before. NINDS (and each of the other Institutes) actually, believe it or not, have an Office (“The NINDS Office of Science Policy & Planning”) that’s devoted entirely to science policy and planning and which helps with developing strategic plans. (They will use that Institute’s resources to develop their strategic plan.)
Vicky emphasized that she didn’t want the community to view this as just another report – as a way to kick the can down the road. Quite the opposite: this is actually an actionable report – a report that demands action – not a report that puts action off. She’s already begun the preliminary steps to put the report into action, and the Trans-NIH Working Group will meet at the end of Sept. to further that process.
The fact that the Director of NINDS (Walter Koroshetz, along with Vicky Whittemore) initiated the report and is fully behind it is important. Koroshetz will now pass the report on to Directors of the other NIH Institutes. It’s different when a Director passes a report to another Director – than when, say, Vicky does. She noted that Koroshetz – the Director of a huge Institute – has been incredibly supportive throughout. Vicky also noted that Francis Collins was aware of the Report and will be sent a copy.
Inclusive, Transparent Process to Begin
The NANDS ME/CFS report was done by a working group of the NINDS Council and sought input from the community through an RFI, but Vicky emphasized that the ongoing planning process will be inclusive and transparent, and it will include and require substantial involvement from the community for its success.
She related how important a comprehensive survey the Tuberous Sclerosis Alliance developed, as part of its research strategic plan, turned out to be. It turned out that the tuberous sclerosis community reported that the behavioral, cognitive and learning disabilities that come with the disease were the most devastating for them – not the seizures. That finding altered their research strategy.
The Trans-NIH ME/CFS Working Group will discuss the structure of the planning process, but it is likely to include a variety of working groups, workshops, reports, etc. which will produce the final strategic plan to move ME/CFS forward. The first decisions will include deciding what they can do quickly, what will take longer, etc.
Some of the upcoming steps may include:
- Focused Workshops – the Trans-NIH Working group will figure out which focused Workshops are needed to develop the strategic plan.
- Clinical Trials – As an example, one of the NINDS Council Working Group’s subgroups focused on clinical issues, studies, trials and developing new treatments. That group identified a huge need for clinical trials but also identified gaps that need to be addressed to produce a successful clinical trial, such as identifying the appropriate clinical outcomes, how to assess post-exertional malaise (PEM), etc.
- Measuring PEM – Determining how to objectively measure the key symptom in ME/CFS – PEM – could by itself constitute a funded grant application (RFA). Requests for RFA’s and other initiatives may be developed to address specific research needs.
- Strategic Plan – A research strategic plan is a plan which identifies the gaps in research, determines what the priorities are, and develops strategies to achieve them. Developing a Research Strategic Plan is a major effort, and the NIH has produced several models which can be used to produce the plan. Whittemore believes such a plan would be incredibly helpful to identify the most important questions facing the ME/CFS research field and to identify priorities, and that some form of a Research Strategic Plan will be developed.
Next up – a strategic plan to move ME/CFS forward at the NIH.
Conclusion
While the approval of the ME/CFS report provides no new funding for ME/CFS, it may very well provide the necessary next step for a major increase in funding. That next step is an NIH-produced strategic plan which clearly states the process the NIH should take to fill the numerous needs in this field. NANDSC’s approval of the report legitimized the many needs facing ME/CFS and gave Vicky Whittemore and the Trans-NIH Working Group access to the resources at the NIH needed to produce the strategic plan.
Producing the strategic plan will probably take many forms including such things as workshops, reports, and surveys and will require substantial input from the ME/CFS research, clinical, advocacy and patient communities. Will we look back and find this vote a pivotal moment in ME/CFS history? Time will tell.
Bravo!!
Lol I dont see this as real progress- this is is more technocapitalism from NIH and fails to reflect motivational intensity or moral imagination. Researchers love to get money to do research and are in no rush to cure or prevent illness. In 1998 NIH said they would fund preventive research on fibromyalgia- good luck finding one study on preventing fibromyalgia.
NIH is no friend to people with ME- CFS- Ill debate anyone of them in public-and we will see how truly undermotivated they are to make substantive progress in curing or preventing me cfs.
David wrote: “Researchers love to get money to do research and are in no rush to cure or prevent illness.”
Would something like an x-prize work better? A prize for discovering the root cause of ME, or a proper diagnostic test. I agree that getting paid for studying but not solving the problem isn’t the best incentive for reaching the final solution. However, researchers can’t run their labs on the hopes of winning a prize, or even on the hopes of developing a commercial product. Surely someone has done research on the optimum balance between funding basic research and prizes for success.
I think the NIH moves like a tortoise, so I have to keep reminding myself that the tortoise did win the race.
best comment i’ve seen on here Linda!
‘possibly the most potentially effective opportunity for change in years to come from within the agency’.
The message could be ‘heard’.
In our modern way of life, people have sometimes become our of touch with each other.
Maybe because the message about ME/CFS was delivered in a palatable form, by people who are known, it could be listened to?
Out of touch with each other ?
The report was chaired by a Council member and it was an NIH produced report – so yes I think it got through. It was good to hear that some of the Council members came up afterwards and stated they had no idea so little money was going to ME/CFS and that the disease had so many needs.
I’m confused. Mainly because I don’t understand the NIH’s organization and procedures but how could the Council members not know that ME/CFS was so underfunded and the disease had so many unmet needs? Has this not been brought to their attention before; or, is this the first time the “council” has heard about the need? Seems like if you are on the council it would be your duty to know about the disease and how much it is lacking in support. Can someone please explain?
The last time an ME/CFS initiative formally appeared before the Council was 2016 and its quite possible that the Council members have changed. Plus when you consider that NINDS budget is almost $2 billion dollars and ME/CFS is not even embedded in NINDS – it’s not one of its formal charges (ME/CFS is not embedded in any Institute – its embedded in the Trans-NIH Working Group) I’m not surprised that the NAND Council members didn’t know much about ME/CFS.
What are the acronyms “NINDS” & “NANDSC”?
Ditto. Same question.
Plus NANDS? Its hard to keep up with all these acronyms, let alone where they fit into the government structure. Thanks.
Yes, difficult to understand and I just updated the blog.
NANDSC is the Council through which all grants and initiatives at the National Institute of Neurological Disorders and Stroke (NINDS)at the National Institutes of Health (NIH) must get approval. In order to proceed further the report had to be approved by NANDSC. We don’t have to worry about NANDSC anymore.
NINDS with Walter Koroshetz and Vicky Whittemore has been leading the charge on invigorating ME/CFS research. I remember years ago Mary Dimmock saying this Vicky Whittemore – she really gets it! We are so lucky to have her pop up and lead the charge for us. Individual make a difference.
Trans-NIH Working Group – the action now goes to the Trans-NIH Working Group – a group composed of Institute representatives which facilitates the work done on ME/CFS at the NIH. That group is responsible for producing the strategic plan. We should start hearing how that will go in the next couple of months.
Thanks for the clarification of who’s who and structure? Most important thing now that the ball is rolling is the Community to get involve via RFI’s and speak !
Communication with each other is the key!?
Thankful and grateful to everyone that was and is involved and listened..
Keeping All the Hope for better days ahead for All of us!
Jumping 4 Joy inside as well when I read this..thanks Cort ??
What a great way to start the day! Thanks, Cort!
Thank you, Cort, for this big step forward. Your constant contact and meetings and writing about the NIH has been important to this process. My neighbor works with Vicky Whitmore so I am going to ask her to deliver a Thank You card to Vicky and to Dr. Koroshetz. This is a big day for us. This is your thank you card, Cort–I cannot imagine where we would be without you !! Hugs and more hugs, Nansy
Yes, Nansy I wholeheartedly agree with you ?
Me too!!!
Thanks Nansy – what a nice touch – a Thank you card personally delivered to Vicky. I’m hopeful that the added legitimacy an NIH produced report on the explicit actions needed to move ME/CFS forward will give us a good push. I don’t think Vicky and Koroshetz would have devoted a year to this project without a significant potential payoff being present Time will tell! It’ll be interesting to see how this plays out over the next year.
Can you give us an address to send thank you s?
That’s a good idea, Nancy.
sorry; I spelled your name wrong! Nansy.
Hopeful news!
Agree, Nansy!
Cort is making history ??
And I think the card for Vicky Whittemore and Walter Koroshetz is a lovely human touch.
I also think that maybe now is the right time for this message to be listened to.
I don’t mean that it shouldn’t have been heard earlier, I just think that now we are beginning to realise that things are going on, that no one realised was capable of happening in the 21st century.
I feel that it’s tragic that not only do people with ME/CFS have to deal with horrible symptoms but that they often do so in such isolation, sometimes while being belittled, not being believed and being denied the care they so desperately need.
Like with the illness itself, we have been caught in a trap. People with ME/CFS are often just trying to survive as best as they can. They are not in a position to fight for their rights; they’re often too sick, too downtrodden, it takes too much energy.
I’ve managed to improve over the last few months, having survived a terrifying number of years. I am trying to work out how I can learn to live with what has happened to me, how badly some people have treated me, the lost years (12 so far), the poverty etc.
I do feel such tremendous anger but who/what should I be angry with? Doctor’s have to follow current practice, otherwise they can be struck off/sued. Doctor’s are dependent on researchers being competent and thorough.
Researchers need to be very, very careful because inaccurate results do so much harm.
The horror stories that are going to emerge from the ME/CFS community are going to stop people in their tracks. It’s almost unbelievable but then again, as humans, we’ve been here so many times over the years…
I just think we need to look after ourselves and support each other as best as we can.
I am hopeful. I am embracing becoming a cranky middle aged woman. I have learnt a great deal and I’m trying to take each day as it comes.
My wife has suffered from ME/CFS since she was a teenager. Now, at the age of 65, she is praying for someone to develop a cure. At the very least, she hopes for something to relieve the worst of her symptoms.
As a family member, I get to see how this disease impacts her life. I watch her sadness. A sadness caused when she cannot join me in activities because they take her from her bed. Just sitting up in a chair is often impossible.
To see that the NIH recognizes the number of ill people is heartening. I only ask that the NIH go that extra few steps as quickly as they can. Please fund serious research programs. Please encourage more young physicians and researchers to take part in eliminating ME/CFS.
I would love to see my wife enjoy a few years of healthy living before she dies. It is a small dream for one person, but when one thinks about the number of people suffering, a cure would be a massive gain for humanity.
NIH took interest in me cfs and fibromyalgia- in 1998. 20 years later they havent accomplished much. I dont see convincing signs that NIH has the motivational intensity to make substantiv progress in preventing or curing me cfs anytime soon. There is too much too gain- from their viewpoint- in doing research ad infinitum. Just look how many trials there have been on opioids- NIH is in no ruch to cure any illness as there is too much incentive to use public monies to do research without end.
Finally, as Hume wrote 2 centuries ago cience is underfit to reach decisive conclusions. Let Dr Koroshetz debate me on the issue in public.
I think there will always be plenty of Illnesses to research and spend public monies on. So not sure I am buying that as the reason for them not to fund ME/CFS research. Fortunately, I haven’t had decades of this terrible illness but have seen my daughter deal with it since age 4. She will turn 26 in a few days and I’m still holding onto hope. What else can I do? I’m not saying NIH is going to do miracles, just not believing they aren’t doing it for the reason you stated.
Thank you, Cort. I appreciate your take on this report because I was concerned/bothered/angry that the report lacked any mention of the totally inadequate funding ME/CFS has received.
Right. If I have it right the report was a very strange thing – the kind of thing that large bureacracies probably require: it was a report to make the case for the need for a larger report – a strategic report.
In his presentation Stephen Roberds, did however, illuminate the poor funding, the high prevalence and the fact that this million person plus (probably) disease gets less funding that “many” rare diseases he knows of – and the reason is probably because we’ve never taken the kind of strategic approach this multisystemic disease needs to get at a core pathology which researchers will then, presumably, leap upon.
Hi Cort,
just an update on a European petition for funding for biomedical research for ME. The petition will be discussed at the European Parliament’s Committee on Petitions (PETI) on October 3rd in Brussels. It’s scheduled for discussion around 11.05 CEST [petition no 0204/2019].
You can follow the committee proceedings live by webstream at the following link http://www.europarl.europa.eu/committees/en/peti/home.html?fbclid=IwAR0eRmsMh35Ni4fdDPOay-Xzyvo_xeqqOlyyJNd4vYwYHFhu2BkECspFb3k
If you are unable to watch the meeting live, a recording will be available the following day.
ME Action are supporting the petition; there’s a link to their announcement below*.
Also, readers/friends of readers who are citizens of the European Union (EU) can sign the petition.
You might be surprised how far behind the EU is compared to the US. Lyme disease research received 33.9 million euros (roughly US dollars) from the EU Commission in the last 10 years; ME received nothing. The lead shown by the NIH may help to move other governments such as the EU Commission.
Well done to those responsible at NIH – Vicky Whittemore and Walter Koroshetz —-.
Thanks for the article – complex stuff the workings of governments/institutions.
*
https://m.facebook.com/story.php?story_fbid=2444194152529643&id=1408335399448862&_ft_=mf_story_key.2444194152529643%3Atop_level_post_id.2444194152529643%3Atl_objid.2444194152529643%3Acontent_owner_id_new.1408335399448862%3Athrowback_story_fbid.2444194152529643%3Apage_id.1408335399448862%3Astory_location.4%3Astory_attachment_style.share%3Apage_insights.%7B%221408335399448862%22%3A%7B%22page_id%22%3A1408335399448862%2C%22actor_id%22%3A1408335399448862%2C%22dm%22%3A%7B%22isShare%22%3A1%2C%22originalPostOwnerID%22%3A0%7D%2C%22psn%22%3A%22EntStatusCreationStory%22%2C%22post_context%22%3A%7B%22object_fbtype%22%3A266%2C%22publish_time%22%3A1568372401%2C%22story_name%22%3A%22EntStatusCreationStory%22%2C%22story_fbid%22%3A%5B2444194152529643%5D%7D%2C%22role%22%3A1%2C%22sl%22%3A4%2C%22targets%22%3A%5B%7B%22actor_id%22%3A1408335399448862%2C%22page_id%22%3A1408335399448862%2C%22post_id%22%3A2444194152529643%2C%22role%22%3A1%2C%22share_id%22%3A0%7D%5D%7D%7D&__tn__=%2As%2As-R
Making Progress!! Small steps count! Getting those touched by this horrible condition to provide feedback DID give them support to form the much-needed ask and the desperately needed plan. Small steps in the right direction are so much more than they appear 🙂 !!!
I am almost afraid to hope that there will finally be progress. Maybe it’s because I’m about to turn 65, I’ve had ME for the past 22 years, I’ve been housebound and recliner/bedbound for the past 5 years, and I continue to worsen with the passing of each month. I can’t help but worry that we won’t get medications to help us, or a cure, in time to help me before I die……..or even worse, before I become totally bedbound and unable to participate in life at all……a living death!
Bless you Donna!!!
This “report” is at least 20-30 years too late!!!!!
But better late than never, I guess? ? It is our lives at stake….
I wonder if we (ME/CFS communities) should do some kind of graphic campaign that shouts (in my case) SIX YEARS in bed/wheelchair! Same language, different number of years, in living death or versions of it — I’m not in condition to do this myself. Just planting a possible seed.
Well if we are to take it seriously, the budget needs to be dramatically increased to a level of equity with similar diseases. Like MS, Parkinson’s, AIDS, heart failure. Or even just scleroderma, lupus, and RA. Heck maybe we will finally pass “male pattern baldness” in the funding race, just for starters.
Another sign of sincerity is to do a reverse spin. Make this disease the mystery drama of the century instead of the cheap joke that has been in place for 40 years. 5 generations.
As long as the bias is not corrected – in a 2 prong scientific and public awareness approach – neurologists will continue to refuse to see ME/CFS patients, rheumatologists will continue to insist we have no inflammation as they roll their eyes, and young researchers and young doctors will continue to run for the hills. That may be among the greatest needs – many of our too few, rare and precious ME doctors are past retirement age – with no replacement in sight. The medical schools must lose Federal funding if they don’t teach this disease. Funds must be provided for internships and fellowships focusing on ME/CFS.
And Without public awareness of the new spin that oh, actually, it is a real disease, and a serious one – Spouses will continue to walk out, children will feel ashamed of parents, teachers will be unsympathetic to students.
And because there is no alternative – the sickest, who have lost their support network, will wind up in assisted living facilities – 24/7 bright artificial lights everywhere, blaring TV, people hollering at all hours, overmedication, constant forced gaiety and activity, caregivers rattling trays and yelling in your face because they think you are hard of hearing, and noisy roommates . in other words, the worst possible environment – a place where people are not allowed to lie down all day long.
I surely do hope you are right. It sounds like change for the better.
A unified approach also ‘demands’ branding.
What logo would be supported by the me/cfs community at large, could he used by all associations, and could be used as ‘the’ logo for fundraising?
What group ir association would have to own it, or be started to manage it? and continue branding efforts?
Would it be a new member (family, patients, friends, supporters, association / organization?
Could not figure out how to start and new thread / topic for this.
Kate – I think there may be an opportunity for help under the HEAL initiative. Politics aside, I felt the question asked by the HEAL Program Director was interesting in that treatment support dollars could possibly be garnered from there? For me, the current efforts are Research and there remains a need for Treatment help now.
I think the HEAL Initiative which has a goal of over a dozen new pain drugs being approved over the next five years could be really helpful. Let’s hope!
Thanks for reporting on this – I share your optimism. I am joyful that we have made it to this level of strategic decision making and appreciate everyone’s efforts.
I recognize and understand that some may see this as yet another bureaucratic endeavor.
The good news is that the effort did not die with the sunsetting of the CFSAC.
I believe it is important for our brains to remain optimistic despite the ups and downs. This way we can channel our limited energy and pain toward helping in areas that are supportive – eg. sharing info with our local GPs, encouraging researchers and clinicians to submit grant applications, helping sufferers in our area to get the support and assistance they need.
Cort – don’t know if this is a fit for you – how about an easy to read article on pioneering research topics that could be used in brown bag lunch talks at local universities to get more researchers interested?
I am asking you because you have a keen insight. I have provided many a quick to read article written by you to clinicians over the years. To wit, stimulating feedback ensued even if at times I would have preferred a different answer. If not you, then a referral would be appreciated.
Hi Janet,
I went to visit my GP last week, with the main focus being my and my son’s asthma.
Last time I saw him I briefly mentioned ME/CFS, head down, eyes lowered.
This time I thought I’m just going to say that I believe my health issues stem from ME/CFS. So I did.
I went on to outline the problems with the PACE trial etc, and I could see him take notice.
I told him that apparently the National Institute for Clinical Excellence (NICE), in the UK are only changing their treatment guidelines, getting rid of GET and CBT, in 2020.
I explained that biomarkers are being found for this condition and he said that yes, maybe in the next 10 or 20 years, biomarkers will be in place.
I felt confident and quietly assertive and he listened to me. Having this site is brilliant because I no longer feel like an exile, a lone figure in a hostile world…
A small encounter but a significant interaction for me.
Also and very importantly, I have been unwell for 12 years, with varying severity. I have gone from being 46 to 58. That’s a significant age bracket to move between.
So when my GP said that maybe in 10/20 years time (which is nothing in research years) the situation will have moved on, I thought but in 10 years I’ll be nearly 70 and in 20 years I’ll be nearly 80 ?
Anyway I suppose my point is that, as you wrote, there are things we can do ourselves…
Yes. It is unfortunate that it takes so long to go from research to practice. As patients we can advocate for a quicker transition for biomarker use once it emerges. Saddened to hear about your experience though I share it. I try to maintain hope in that I want my nieces and nephews and the next generation in general to avoid ME.
Thanks for your comments and kudos to you for speaking up! I used to think Drs had all the answers and was struggling with communicating with them. Then my PCP said to brief them like I did to senior execs so I have been using this approach.
Thank you Cort for contributing so much energy in your efforts to keep us educated and informed about what is currently going on in the world of ME/CFS research. So much going on beneath the surface that we don’t see or understand. Thank you.
They ignored us systematically and institutionally, on purpose, diverting research funds – will anyone be held accountable? I will have lost my career as a research physicist 30 years ago this November.
It would be nice to see a few people go to jail.
Hi Alicia,
Yes, I think accountability is crucial. I believe Dr Sarah Myhill is challenging the PACE authors in the UK.
Having experienced the more unsavoury elements of the counselling and psychotherapy profession I’ve now found all sorts of books revealing the behind the scenes parts of that profession and the medical profession. Brace yourself if you read them…
Here are the books I’ve read so far:
Against Therapy by Jeffrey Mason
Can Medicine be Cured? The Corruption of a Profession by Dr Seamus O’Mahony
This is Going to Hurt: Secret Diaries of a Junior Doctor by Adam Kay.
Do No Harm: Stories of Death and Brain Surgery by Henry Marsh
I’m not completely cynical, I just think that a bit like our microbiome, we need to assist our more beneficial bugs to thrive.
In my area of counselling and psychotherapy there are plenty of genuinely decent therapists out there. However they have to compete with less ethical colleagues.
Also I think some of the ‘nicer’ therapists have absolutely no idea just how much damage the incompetent or nastier therapists are inflicting on their vulnerable clients.
I stopped seeing clients a few years ago for many reasons and now I just couldn’t trust my brain, memory, energy etc.
So much loss, I find it unbearable to think about at times…
I was thinking the other day of the Transactional Analysis concept of the Adult to Adult interaction.
Some, not all, of the medical profession are behaving like Parents talking to their patients as though they are a Child.
No, we are not young children.
The Seamus O’Mahony book was published in 2019 and gives a fairly alarming explanation of the research world. I should expect anyone working in that area, is already familiar with this scenario.
I don’t agree with everything he says – he has a few very big axes he’s grinding – but I think he gives an insight into a world I had no idea about.
Decent researchers need to be supported.
There is a site regarding the higher prevalence of Autism in Military Families, and they have “ME” listed as “Mental Exhaustion” – REALLY! It’s more of the same ole, same ole.. divide & conquer, Gaslighting – especially via “PTSD” – our brave warriors are still suiciding at alarming rates via their systematic invalidation… when will they admit & DO what’s necessary to educate & eradicate?
Hi Mrs T,
I watched a repeat of a BBC programme on PTSD in the military by Dan Snow last week.
The programme was excellent – very supportive of those military personnel suffering the after effects of trauma.
There are a few clips you can see but being the BBC, they have it locked down.
Take care,
Tracey Anne
“A lack of knowledge exists regarding the underlying biological mechanisms of ME/CFS”….Refreshing honesty about our lack of knowledge regarding this disease in the face of the blizzard of papers on MECFS that continue to come out in pay to publish vanity press publications that are not worth the paper they are written on. Our knowledge of how this disease works is still at ground zero but you wouldn’t know it from all the worthless stuff that continues to be churned out by second and third rate researchers. Bravo for the editors of this for having the guts to say so.
Was just watching an interview between Ron Davis and Llewellyn King, that I was sent by the OMF.
It’s also part of Llewellyn King’s series of videos called ME/CFS Alert – Finding an ME/CFS Biomarker Ronald Davis Stanford University ME/CFS Alert 109
I also came across another fascinating interview with Vicky Whittemore called MECFS Research at NIH with Vicky Whittemore PhD MECFS Alert Episode 108.
I’ve watched Llewellyn King being interviewed by Ron Tompkins, I think, and I find him very easy to listen to.
I was unaware of this series of interviews and they’re about 20 mins long, which I find do-able.
i worry that all this research will lead to answers only to be snuffed out by a drug company that dangles carrots in front of us all with an attached price tag that none of us will come close to being able to afford.
I recently read an article in where a researcher spent his entire working life on , i think it was genetic pancreatitis, in which he found a cure but the drug company put a one million dollar price tag on the cure drug. FALSE HOPE
If we do the math,which is what the drug companies will be doing, we see that roughly 3 million people in the USA/Canada have ME/CFS. Thats a lot of demand when and if a drug will be needed to cure us all. I worry GREED will also raise its ugly head once a cure is found
It’s a possibility. Let’s hope not.