Are you hesitant to take part in rese... - Research Opportun...
Research Opportunities
Are you hesitant to take part in research? Please explain your response in the replies below :)
AnnaHUHealthUnlocked147 Voters
I'm enrolled in a research group on HU and have been participating daily since March 31 2022. It's been the most rewarding mental health therapy experience in my 48 years of dealing with untreatable depression. I'm also ADHD, GAD, PTSD, panic disorder, childhood trauma and sexual abuse, substance abuse and addiction, borderline eating disorder issues. I have been paying out of pocket for Theta Burst TMS treatment since Feb 2022. My treatment protocol has been evolving to customize my regimen for optimal results and I'm zoning in on a schedule that will keep me in remission long term. I've been researching deep brain stimulation and have communicated with others in the anxiety and depression forum about their experiences with TMS and DBS. I am highly motivated to educate myself. I spend many hours every week interacting here and posting about my personal journey. Mental health and dogs are my 2 passionate subjects in life. HU is a wonderful tool for my mental health growth. Dennis Simsek The Anxiety Guy, whom I've been told used to be a participant here, and Gabor Maté are my 2 favorite teachers on YouTube. I meditate and try to use mindfulness practice for anxiety and depression. I have a fantastic psychologist for CBT and talk therapy. I have had psychiatrists in the past when I needed psyche meds, but have not been on those since late 2018. I do not tolerate the meds for many reasons and chose to go off them on purpose due to side effects hijacking my progress. Theta Burst TMS is the only treatment that has put my TRD in complete remission for any length of time... PERIOD. I've never had clarity on ANY med that can compare to the results I've had from TMS. I use med marajuana nightly for several reasons. I've had 7 surgeries in 5 1/2 yrs. 4 spine, both shoulders and gallbladder removed. I refuse to take all rx meds, including OTC. My profile page is full of testimony of my personal growth 📈 it really is off the chart. Thank you HU for being such a wealth of information and filled with compassion souls that all share similar challenges.
I am so glad to hear how much of a positive impact your experience has been on your mental health. Thank you for sharing your story, it really is so inspiring. I know you will be an incredible asset to this community.
after reading how beneficial engaging in research on this site has been I would like to sign up if possible. What is TMS & DBS in treatment of PTSD & depression
Hi Jeannie
TMS= TransMagneticStimulation
DBS= Deep Brain Stimulation
DBS has been used to help Parkinson’s patients for a bit over 2 decades. I know as my father had Parkinson’s and had the surgery somewhere between 1992-2000.
I had no idea DBS was being used for Treatment Resistant Depression. Personally seeing how it assisted my father and his brother (both had PD and had the DBS surgery) I would jump into the next slot I could find for the awake brain surgery required for DBS to be implanted. They place wires in a spot in the brain and they are connected to a magnet placed under the skin near the collar bone. The DBS helped slow down the tremors and other movements from the Parkinson’s
I do not want to take part in drug trials but if anyone is doing research about how to improve how patients are treated in and after ICU I would be happy to contribute because I know from experience just how much room for improvement there is.
Thank you for your response! I appreciate you taking to time to express your interest in research about treatment in and after ICU. We will be sure to let you know if something comes up 😀
On the one occasion that they wanted to put me in the ICU, sedate me, and put me on mechanical respiration, I found that the clinical team listened and didn't overide me. I was hypoxic because of pulmonary toxicity, and knew that if I was put on mechanical respiration, that I had 50% chance of surviving. I wouldn't let them ring my wife at 1:15 am. The night nurse and ICU sister were really kind in trying to pursuade me, but I said I wasn't going to the ICU. The team worked through the night and kept me in this world on 25 litres / minute of 70% oxygen. In the follow up, the doctor said; you were on 70% oxygen and nearly died. The ICU consultant said I'm away for the weekend, but I've told them that if there's a problem, they are to contact me. Thank you North Bristol Lung Institute and Professor Ann Millar.
You had a lucky escape. If you ever wonder what you missed, look at the posts in the ICUSteps community.
I totally agree! I dread going into our hospital as on two out of three occasions, I’ve been severely upset. We are so vulnerable when not well.
I completely agree with you Kit10. And I typpe/speak from personal experience. Great username you have. I like it. Makes me smile for some reason like this 😀😁😀😊
I am not hesitant because research in the area of mpns is so important.
Very happy to put myself forward for studies into Hashimoto's Hypothyroidism, gene testing and preventative studies etc
I am hesitant because all of this is new to me and there’s a lot to learn and understand.. I’m still wrapping my head around my health issues and so far, treatment has been worse than the “cure.”
I can understand why you may be hesitant, there is a lot of misinformation about the scientific process. I hope that by being part of the community you are able to feel more comfortable about the prospect of taking part in research. Equally so, if after learning more you still don't feel comfortable, that's okay too!
AnnaHU I would be very reluctant to take part in any drug trials but very happy to discuss symptoms, have physical examinations, blood tests etc or have genetic testing.
I’m happy to Consider any trials in thyroid issues
So glad to hear! Welcome to the community 😀
I take part in stroke studies - I'm a stroke survivor - as well as AF studies such as AFFIRMO. I've found the Universities of Liverpool and Bristol, and the Stroke Association to be caring in their approach. I'm also a "mystery patient" for medical students.
I've learnt more about stroke and AF through this and, it's a great way to amend preconceptions.
Hello there john-boy-92, thank you for sharing your experience, it is so important for people to show that taking part in research can be so beneficial!
If we would like present-day and future clinicians to respond to our needs, then we must be ready to be involved, Already this year I've learnt from involvement that:
* the action of clopidogrel (for strokes and heart attacks) depends on a certain gene not being mutated (current Bristol University study);
* whilst Troponin levels signifing cardiac damage are different in men and women, there is no difference between the sexes in the action of anticoagulants.
id be very happy to take part in research and help others - I'm part of Biobank which is a huge success.
Very happy to contribute. This is how we learn.
I’ve taken part in a few research projects and think it is a very worthwhile contribution to science.
We are glad you joined to community 
I haven’t had covid even though I’ve been exposed and would love to be part of the gene testing research on this.
I’m happy to take part in any kind of research.
My GP puts me forward for medication research including one on my allergy to penicillin. He seemed to think that with complex PTSD, anxiety and having experienced anaphylactic shock I would be fine to take penicillin in a medical situation - quickest I've every said no.
Thank you for taking the time to comment. If you feel comfortable answering, what are the reasons behind your decision to say no?
I have had so many allergic reactions to drugs I am not prepared having an allergic reaction again. Some were really bad and I have to be so careful with drug interactions so it's not something I want to do.
hello
I have Hashimoto’s and the DIO2 gene which indicates I convert poorly and benefit from T3.
I deteriorated so extremely on T4 alone that you would weary of reading all the symptoms I had. The final decider on getting the gene test done was that I had simply ‘lost my brain…I can only describe it as a black hole’. The transformation as a result of T3 has (without being dramatic) given me reason to live again.
hi AnnaHU
I am new to the group yet not new to Clinical Trials, or medical research. I presently am participating in a few studies at the University of Pittsburgh.
What type of Clinical Trials are you specifically targeting?
Are you connecting with a BigPharma or University or other organization? If yes, which?
Hi there Julie729,
This community is covering all things relating to research and learning about the scientific process. We aim to use this platform to help people understand how they can be part of advancing research in their condition area.
We will focus on a wide range of trials and research studies, partnering with both pharmaceutical companies and other organisations depending on the project and/or topic.
I hope this has provided you with some further clarity
Anna
No problem with research
While I have been an avid participant in research [as a patient/subject] in the past [especially in the earliest HIV vaccine studies of the 80's], it has taken a bit of time and research to find the optimum treatment plan for my disease., so I don't want to risk that.
However, if my treatment isn't making the goals needed to control my disease, I will again avidly seek out whatever research offers the possibility of control.
Best,
PA
Thank you for sharing your experience with participating in research with the community!
no i am happy to take a pole, anything that can help us learn and maybe help our health
Hi
Yes I agree on helping others... I do some things differently.
But I am in NZ born of ENGLISH descent.
My story begins in September 2019.
STROKE with AF and within 4 days a Carotid Arteries Scan showed
a shadow on my thyroid. PAPILLARY CANCER.
4 months later THYROIDECTOMY with 12 right side lymphs removed.
1) NO FOLLOWUP after Stroke Left Frontal Lobe sited. Carotid Arteries clear.
24. hr monitor @ 187 day avge Heart Rate. 47 night avge. on METROPROLOL 2 ..2 sec pauses results after 1 year 4 months struggle with excessive sweating fatigue, breathlessness. ASKED FOR CARDIAC SPECIALIST.
24 hr monitor @ 156 day avge Heart Rate 47 night avge. on BISOPROLOL no pauses. Excessive sweating with fatigue on exertion.
DR LOCUM ASKED ME TO SEE A PRIVATE SPECIALIST CARDIAC. I DID.
At 2 years 3 months saw the recommended Private Sopecialist
CONTROLLED on CCB Diltiazem 120mg AM Bisoprolol2.5mg PM
123/70. 77-88 H/R DAY avge.
Other Aspects:
Take 125mg Synthyroid @ 4-6am daily. keep to TSH2.0.
Refused RAI Radio Activ Iodine
Refused Suppression. (lowest .9) (age was 71, AF heart issues)
I take Synthroid by way of dissolving under the tongue Piece banana @ 1/2 hr
On PRADAXA 110mg x twice daily.
Refused statins
Exertion still gets me but easier. Improving. Add 25mcg Synthroid to bring down TSH twice a month.
So 125 or 150 daily
Solgar B12 under tongue Sun and Mon Deficient. Keep level at 400-500.
Flixanase as necessary. (cyst showing in sinus Left).
Colofac 140mg as necessaey.
Dry Eye 4 x daily OLYGEL
Oestrogen cream.
Dry Skin lotion.
That's me.
Outpatients yearly. No ablatio cant have - enlarged chamber.
Last June found to have Soft Systolic Heart Member.
AF Rapid and Persistent.
March 2022 Removed TVT Johnson & Johnson Kit. Partial. Success.
cheri JOY. 74. (NZ)
***The moral is DO FOLLOWUPS with STROKE victims. For 24 monitor, ECG, and
CONTROL. If necessary change drug
Your courage is so inspiring JOY2THEWORLD49 - your experience with help many.
I am hesitant because I'll not want to take medications but will be open to participate if it doesn't involve taking some medications.
Not hesitant at all (yet), because if I can contribute in any way and help others then I feel my life has been well lived despite the pain and sufferings experienced.
Thank you for sharing - I hope we can find you some exciting opportunities to take part in!
I think research on our condition is good and I will help wherever I can
Would be happy to be part of research into congenital brain conditions and or epilepsy/hydrocephalus.
Our main focus will be on patient experience research and social listening - this is a type of qualitative research whereby we ask questions about your experience living with your health condition so researchers can understand lived experiences better.
Hi
Such a pretty name.
Having had STROKE with AF (which caused it) and diagnosed with Thyroid cancer 4th day in hospital. I'm now 3 years post thyroidectomy and 12 right lymph nodes removed.
Can I help with anything thyroid?
If you have AF? What classification. Mine was rapid persistent. Finally under control with a private heart specialist.
So with the above both sorted I have fatigue trouble and I have been told well that's the enlargement of your heart.
Reason left too long with a 187 day avge, then 156 day avge and I dont know just how long I had had the AF.
Covid jabs have kept me Covid free. But I refuse flu jabs and haven't had that as well.
Measles is now circling NZ - brought in from overseas but I was tested 3 yearsago and still have immunity.
Its important to have immunity checked before jabs.
I am not having shingles jab as I nursed my Mum through that illness some years ago.
Find a Dr and Specialist whom is interested in you holisticly please.
Take care. You are vulnerable.
cheers JOY. 74. (NZ)