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Suggest ME/CFS priority studies to Norwegian govt by 20 April & prepare to vote for them in PR poll

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
my first study choice would be OI

Dysautonomia/ Orthostatic Intollerance

I think its essential we have more studies done into this as after all one study showed that was it 98%? of ME/CFS patients on testing had some form of this and this is a quite testable problem that many of us have which is going untested and hence then untreated.

Specifically.. how many of us have OI/Dysautonomia and what forms. This should include all 5 noted forms found in this illness which Dr David Bell has written about (including abnormal narrowing of the pulse pressure where the gap between the systolic and dystolic is abnormal).

...............

Heritary Studies

I'd like to see some family case studies done on incidence of ME/CFS within families which have this. We need the question answered ..is there a 25% risk that this illness is passed on? If not what is the risk amount if one of ones parents have or have had this illness?. (the 25% comes from what Ive heard coming from a ME specialist observations of his patients).

..

I'd also like to see a family case study of several families in which have several affected members (at least one very severe) to compare if there is anything different in these to other families. There are some badly affected families out there and as far as I know no family study has been ever done.

............

I strongly also think that more studies need to be done on the very severe group of us (the bedbound, housebound, wheelchair using patients).

Maybe a study on the severe complications found in the severe ME group.. most in this group have some form of severe complication whether its paralyses at times or something unusual showing up on tests. So why don't the unusual tests (past and present) of this severe group all be pooled together and studied for incidence rates etc. How common is the bouts of paralyses in severe ME? How common is it for the bowel (peristalisis) to fail to the point they can non longer go without meds or laxatives? How common is seizures or unconscious in this subgroup?

Lets find out all those things which would help have this illness being viewed as more serious so I want to see the serious complications of the severe 25% subgroup of us studied .. "the worst of the worst study". The results from such a study I suspect woudl be quite shocking. (this could also be turned into a long term study to find out how this group ends up faring ..do those with severe ME get a severly shortened life span?).

I know this isn't written like a submission but the above things are what I think should be priorities with where things are at today.

..........

umm a study into what things make our condition worst could also be very helpful to things. An general negative impact study (done only those who have CCC defined ME/CFS, I'd hate to see an impact study turned into other psych study using a poor CFS patient group)

eg how impacts of being forced to stay working while sick have affected our condition, impacts of GET, impacts of dismissal by doctors, being made worst by lack of support services or living in a mold house? etc What things are negatively affecting ie making our condition worst in our patient group? Are we made worst by various things?

we all know things impact our illness and can put us at a worst baseline but has this been actually generally studied yet? maybe we need some scientific evidence for others to support what we already know of what kinds of things being done to us are being harmful to us.

I don't know about others here but I certainly could do with at times an scientific study which helps me back up to others things I'm saying re things which have impacted me and made my illness worst eg Centrelink forcing me to try to work crashed me and put me at a worst baseline to which I haven't recovered from 5? years later... are others being made worst by government depts.? Is it important to get the negative impacts, scientifically known? (such a study done by a non biased person could be very useful).
 
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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Another me/cfs researcher has said the same thing about th1/th2 to me quietly...it's a shame that some of these pervasive notions aren't challenged publicly more often...
Yes as it isn't evident from reading the research. I suppose people are reserved about criticising colleagues' work. They presumably are measuring a genuine increase in Th2, so it's maybe raining on their parade to then say it doesn't really mean anything? You really do learn to mistrust everything (I wrote a post about Epistemological Crisis in ME).

Is there potential in looking at hormone fluctuation and Immune function? Obviously men, older women and children get ME too, but I think it's often overlooked research wise that vast majority of pwme are menstruating women. I don't have the cognitive energy to write another potential submission in time for today though. I think that I won't submit the th2 one in case they go for it! Depending on further PR feedback, I'll put in the extended family and glucose metabolism ones.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
"I strongly also think that more studies need to be done on the very severe group of us (the bedbound, housebound, wheelchair using patients)" @taniaaust1
@Mark @Sasha in the email on feedback can you add that we feel Severe patients need to be included, even if this is logistically difficult, such as requiring home visits? It seems logical that it is easier to find answers from the most effected. It is illogical to find treatment for the mildly effected, while leaving people who are Bedbound untreated...
 
Messages
2,087
I skimmed the above and didn't see this mentioned, but recognizing the politics of this disease, it would be nice to see more research focusing on validating the patient experience, particularly on elements that are crucial to that experience or particularly difficult for outsiders to understand. The two-day CPET gives us valuable confirmation of an essential element of our experience, as does tilt table and other related lines of research in the neurocognitive space. I wouldn't mind seeing more research showing that even things as basic as listening to loud and/or cacophonous music or being exposed to bright and/or flashing lights can trigger PEM in sicker patients. There is great potential value, I think, in studies that make it easier for people to accept this disease, even if that work has less long-term value than finding tests and treatments.

I was thinking the same in terms of light and noise sensitivity but in terms of finding a measurable explanation for it.
I dont recall seeing much or any research in this area to explain why PWME have these sensitivities.
 
Messages
4
It would be really useful to gather further insight into AMPK dynamics - to replicate Julia Newton's findings especially seeing as this profound abnormality cannot be explained by deconditioing. Also with regard to sensory overload and potential glutamatergic dysfunction - new radioligands for Excitatory amino acid transporter 2 (EAAT2) are in development that could help shed light on dynamics of post-exertional augmentation of symptoms. Would it be useful to tie these two together to see if lack of AMPK phosphorylation further impairs glutamate uptake? I'm hoping more work will come out to examine purine pools and LKB1 alongside AMPK status.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@timeforchange the online form has set questions and @Sasha has asked us to answer them here by today to set up a poll about which are most popular. AMPK definitely worth suggesting. Do you have time /energy to answer these today?
  • In what area do we need new research into CFS / ME ? (Max. 1000 characters )
  • What specific issues should be investigated further ? ( 1000 character limit )
  • Why is this important for this population ? (Max. 1000 characters )
  • Why is this important and useful for therapists ( health ) ? (Max. 1000 characters )
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@mango added link to this in the other thread. I'm a little confused but think this is what Norwegian ME Association is going to say. Interesting as I'd understood questions to require more of a focused research proposal, making a persuasive case for why they should study my idea (my OH is an academic so I'm used to helping cut out extra characters in research applications!). Perhaps they will separate out ideas for their actual submissions? "[Norwegian] ME Association will also submit proposals, and under is a list of the areas the union priority.The questions are the same as in research council form." I think these are suggestions to their members for what to include :

Via the joys of Google translate
https://translate.google.se/translate?hl=en&sl=no&tl=en&u=http://me-foreningen.com/meforeningen/?p=8701

In what area do we need new research into CFS / ME?
Starting in the most homogeneous diagnoses (possibly supplemented with wide / old definitions CDC / Fukuda and for children Jason 2006): ICC, SEID) including B cells, T1 / T2 cells, NK cells, others lymphocytes / muliger biomarkers ME, viruses, aggravated by exertion, bike test / recovery period, POTS, triggering factor (EBV etc.)

Research forward should focus on:

  • Somatic treatment of ME: Rituximab, Cyclophosphamide and other immunomodulatory therapy, Valecyte, Immunoglobulin
  • Somatic treatment of CFS symptoms: Ampligen, LDN, nitroglycerin / L-Arginine / l-Citrollin, saline infusion to POTS, pacing within 70% of capacity as Qi gong (Important to convey that this is biological treatment, not psychosomatic)
  • Questionnaire surveys on the effects of different forms of treatment (both improvement / no impact / deterioration) in selection of NPR registry and respondentdrevne nationwide sample
  • Pacing ie limit activity to 70% of the estimated limit, limit set by the patient
What specific issues should be investigated further?
  • Somatic therapy: Rituximab and Cyclophosphamide (seriously ill) and other immunomodulatory therapy: regular and maintenance therapy. Valecyte (if viruses), immunoglobulin by Norwegian and American protocol. Both simultaneous combinations and non-responders.
  • Somatic treatment of symptoms: LDN, mineral balance, if POTS: saline infusion, nitroglycerin, L-Arginine and L-Citrollin
  • Questionnaire Surveys: Diagnosis History, how greeted by doctor / specialist health / private programs, treatment history, inter alia, what offers they have received, have requested but not received (eg immunoglobulin), which implemented, the impact (both improvement / no impact / deterioration) what offers they want
  • Pacing within 70% of the patient's capacity. The patient sets goals but are offered: Development of cognitive and physical capacity. Subjective and objective indicators (heart rate monitor, polysomnography, activity and symptom diary)
Why is this important for this population?
ME takes maybe not directly life of patients, but pushes them out in the dark for many years. Here the experimental treatment to. ME patients often have only HOPE again.

We know that all the somatic treatments have helped some, that no one has helped everyone, but also that no one has gotten worse. Therefore it is important to research on a range / combinations of therapies for different subgroups, for example by triggering factor so that doctors can give each patient a customized quote.

We also know from the ME Association's user survey that cognitive therapy paired with graded exercise has made many ME patients worse or even much worse. Cognitive therapy with graded exercise therapy (CAT / GET) may only be administered to patients who are NOT meet the stringent ME diagnoses.

Why is this important and useful for therapists (health)?
Despairing GPs can get something else to offer than to refer to cognitive behavioral therapy and graded exercise therapy as we know has led to deterioration and crash for a significant share.

Health care can save huge funds. Multi-center study costs about $ 200,000 per patient. 1 year in an adolescent psychiatric institution costing in excess of £ 1 million per year.

Norwegian medical research attracts considerable international recognition for Rituximab-breakthrough.Important that we exploit the potential.

*Norway and the Nordic countries in a global context a unique patient registry in Norwegian Patient Register in 2008. Important to use these whenever possible, preferably in Nordic cooperation.*

Most nationally representative surveys can provide health services is a basis for assessing current offer to their patients."

I think this is useful to know in terms of backing up some of the ideas and also trying to spot what they've missed. They don't seem to mention genetics which is surprising. There's a clear focus on treatment.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
OK, so we've been reviewing these and, while there are some very interesting ideas, I'm afraid there just aren't enough submission-ready proposals for a forum vote to be worthwhile and add any value to people just sending in their proposals as individuals. But the PR board will send a letter making some of the general points that people have raised on this and the other thread (for example, being careful about case definitions, and being sure to look at the severely ill) that aren't likely to be the subject of formal proposals.

I hope it's not too disappointing that there won't be a vote! But on the plus side, I hope this exercise at least helped give people the impetus to get their ideas firmed up - and I hope that people will take the extra step and submit them.

So, here's how to submit your proposal on the Norwegian form:

1. Go here.

In English, this page reads:

You are hereby invited to suggest issues that could form the basis for important new research.

Your contribution can help to improve the treatment of and care for patients with CFS / ME.​

Click the blue "Neste" ("Next") button.

2. The first four questions translate as:
  • In what area do we need new research into CFS/ME? (Max. 1000 characters)
  • What specific issues should be investigated further? (1000 character limit)
  • Why is this important for this population? (Max. 1000 characters)
  • Why is this important and useful for therapists (health)? (Max. 1000 characters)
Then:

Which group do you belong to?​
  • Patient/family
  • Primary care practitioner
  • Specialist care practitioner
  • Other practitioner
  • Other
Once you've put your answers in, hit the "Neste" button again. You'll see the final page, which translates as:

Thanks for your input!

Research will publish a newsletter with general discussion of the proposals received after May 3rd.​

That's it! :)

Just tagging everyone on the thread to be sure you see this: @Justin30, @Jenny TipsforME, @mango, @mfairma,
@taniaaust1, @BurnA, @timeforchange.
 
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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I'm guessing it's still worth letting people know on twitter etc because there's time for individuals to write a proposal.

I'll enter the family genetics one and glucose metabolism. Was there any feedback from the board about those in particular?
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
So, here's how to submit your proposal on the Norwegian form:

1. Go here.


That link didn't work for me but this did http://www.forskningsradet.no/progn...t_behov_for_a_forske_pa/1254016809461&lang=no then I clicked the link utfylling av dette skjemaet (translated as something like fill in the form)
I entered my text. Had to edit a bit - Word must count characters differently :mad:. Then clicked Neste. At the end there seemed to be a thank you message - I've watched enough Scandinavian noir to recognise Takk anyway. You don't enter your details at all so I suspect we won't know what happens with our suggestions, unless it turns up in a journal article in a couple of years time!
 

mango

Senior Member
Messages
905
How about replication of studies done by CPET 2 day exercise testing. That should help shut up the psychobabblers, right? http://www.workwellfoundation.org/

ETA: I too believe replication of this would be very valuable, I definitely want to see that happen!

Katarina Lien's 2-day exercise study will be published in a few months. So this has very recently been studied in Norway. However, I'm not sure how closely her protocol follows the Workwell's.
 
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