David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

If the nih and MRC approaches aren’t working something had to change. I can’t accept the well wait twenty years as little bits of research slowly unfold the picture more, we are way behind other illlneses already and something needs to be done. I’m no expert in what but I note two, albeit different, tough health situations HIV and Ebola, when they got the will behind them got sorted. To me it’s like the brain cancer intervention in the U.K., things can be acted on and radical step ups put in place, CFS is a harder field because of the muddle largely caused by the medical establishment of deciding to name it CFS, let that be a catch all for fatigue and let it be psychologised. That’s their mess and we are paying.

What the nih is doing is insufficient, they could have funded other centres of excellence for a start. It’s only because Ron Davis got a windfall that we got the additional ones funded. I’m sure lipkin and Montoya could do valuable work with higher funds, klimas too. If someone quite in the establishment as lipkin is, is saying to the nih we could do more with more money but you’re not giving, it’s telling. Then there’s the researchers that could be lured in with promise of money.

I don’t think tullEr used this quote but to me it says it all:


@MEActNet: .@NINDSdirector: Thank you, Dr. Koroshetz, we want to work with you. But, at the pace the NIH is moving, you will leave an entire generation behind, to die without solutions. We crucially need you to deliver biomarker & treatments for #pwME in 5 years. https://twitter.com/user/status/1074779141382250497


Problem solving , past the hurdles and difficulties to generate the progress required is what is needed, I just don’t think in the USA or the uk those at the top are really committed to solving this problem. I think it’s great#MEAction are pursuing this when the same response from UK got an “ok then” from charities.

 

I would like to see all the different research groups working together more.

They all seem to have access to relatively small amounts of funding for part funding their own projects.
If they liaised more, it could speed up the process, help eliminate any 'dead ends', and reinforce areas that deserve more investigation.

Maybe then the bigger funding will come.

 

I appreciate those trying to make sense of the NIH’s position. But I don’t see how one is supposed to break the cycle of inertia without throwing some money at this disease and facing the risk of funding some bad studies in transition. I don’t really see what alternative there is. Wait and see if some good researchers and study proposals arise out of nothing? Wat if that doesn’t happen at all? I don’t see how time will change anything to this problem. A lack of good research proposals has been a problem for 30 years now.

Currently we happen to be in a situation where one of the most renowned biomedical scientists is attracting top researchers into the field, because his son has the disease as well. That’s quite an extraordinary situation but still NIH isn’t stepping up their game. It makes me wonder what miracles we'll need in the future to actually speed up the research into ME/CFS.

I do not think it’s reasonable to expect that the few ME/CFS researchers and their underfunded studies will create a breakthrough in this complex disease in the coming years. But apparently that is what the NIH is waiting for. I think we can make the argument that this is irrational.

 

I agree if we are not going to properly fund research until we know enough about it then how are we ever going get to the point where we know enough about it.

 

The perspective of the NIH is that they are properly funding projects that look likely to be productive. I can believe that is a reasonable assessment.

I don't like to be negative but there is a lot of hype around ME projects we keep getting snippets about but a lack of the sort of solid preliminary publication that is normally expected to justify a big grant. If something real is being found it can be published.

In the past fields have moved forward when someone has made a mental connection and started out with a new way of trying to solve a problem. That can happen equally for ME at any time. Maybe it has already happened and the results are going to feed through shortly.

 

Do we need to re enact the method, animal or human, to study the end result. We know that an infection seems to cause lasting changes, can’t those changes be identified anyway the usual way of contrasting healthy vs us. There’s also the many cases that are infection triggered without combined stress or exertion factors where genes seem to be important.

There’s also possibly a majority of people who have infections, push through and don’t end up with ME? Even if we can pinpoint our own poor self-care with a virus as contributory , don’t many people poor self-care when Ill, go though stress or eat poorly, don’t rest enough etc but don’t get ME so isn’t genetics really the important issue in deciding who gets it ....

 

It's very hard to tell what's representative of most patients, since most do not share their perspectives. Most of the comments on Collins' NIH tweet were about increased funding. In terms of ICC and mold, I wouldn't say there is any "general view" but there is a committed core of those who feel strongly about both issues. That seems to vary a lot from country to country.

 

Lots of researchers want to work on this, just not those who are AT the NIH. The NIH need to distribute money to Younger, Davis, Montoya, Klimas, Hanson, VanElzakker, and others that have been working on ME/CFS for years.

 

I’m also very uncomfortable with this, especially given the false reputation ME/CFS patients have for being abusive and threatening. Demanding action in this way seems entirely inappropriate and I do believe this will make things worse than they already are. I sincerely hope I’m wrong as it doesn’t seem like this kind of activism is going to stop........

 

Hi, Trish--do you know any more about this?

 

I don't think most patients believe ICC-ME is the one true definition. That criterion defines a very severe cohort. CCC will capture the less severe, IMO. My symptoms do not meet the ICC criterion and I am disabled and mostly housebound; I do meet CCC.

I think most fit SEID and then CCC; it was the IOM report with SEID that came up with the possible 2.5 million number in the US and I believe the vast majority are meeting the SEID criterion. Patients meeting SEID, CCC, and ICC should all be studied in groups, whether separate research studies or in the same study grouped into which criterion they meet. Throwing them all together muddles the data as someone with severe neurological/neuroimmune impairment might have different cytokine profiles or perhaps T-cell data that does not match those in the CCC or SEID groups.

No, most don't believe it was mold at Lake Tahoe. I onset with mono and do have mold sensitivities no doubt due to the stress ME/CFS has put on my immune system. I had to move to the SW, USA to get away from the constant rains, humidity, airborne mold, and pollens of the NE, USA.

 

I should have rested a full six months, maybe more, but only rested about 2-3 months and then went back to school part time without gym class. But, I might have made a full recovery if given more time to rest.

 

The problem with the nih , as the thread shows is that they just practise neglect and ignore patients, they have ignored largely all the patient groups for years, the committee championing patients was disbanded, if you don’t lobby via mobilising patients and going through the normal channels doesn’t achieve anything, what do you do? I,m not personally supporting the NICE card campaign as I don’t feel it suitable but I did support the MRC email campaign a few years ago and would do so again. I think #MEA did a petition to nih, they have also met them and feel that the roads blockedm apart from applying pressure what else can be done, unless someone famous or in congress can make noise on our behalf. The whole negative activist narrative is used to keep us silent, that’s what’s desired.

 

I think this refers to Leonard Jason's study at the DePaul university, Chicago. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510613/

 

Ah, thanks.

 

Yes, it is understandable if viewed from a narrow angle, but patients feel the urgency. I have watched myself slowly deteriorate over the years. Life is increasingly difficult and painful for me. I have family members who I suspect have a milder form of the same illness. Multiple times a month, there is a new story about a young person whose life was destroyed by the illness, and who usually faces disbelief and nearly total neglect. Occasionally we hear about patients dying, usually from suicide as life has become unbearable for them. The decision by the NIH to take things slowly is also the decision to let patients die and suffer with little hope.

 

Exactly, for many this isn’t an illness you can live reasonably with. A request for significant progress over the last thirty years was not unreasonable with the devastation caused and the cock up with world health agencies in how they mismanaged the illness adding to the disability. We were failed in that request and they have a duty to do all they can to make up for that in a reasonable time frame. Collins et al are taking the small start, Lay foundations, plant the seed and wait for it to grow approach. Patients will not accept that, they could have done that when research was supposed to start with Fukuda but they betrayed us frankly.

With ebola, research had been plodding on for years, then the outbreak meant a whole new strategy for containment, speeding up the vaccine etc had to be rapidly put in place. Many times over plans are made to make progress rapidly, in business, war, science, space research people don’t just express the weary obstacles they find ways to overcome them. The nih mindset was wrong from onset when they’d only fund three centers of excellence, they just didn’t want to come in in a serious way