danielle grilli

ME/CFS patient/advocate. Mama bear.

[danielle grilli @daniellegrilli]

More proof of mitochondrial dysfunction in #MECFS patients. Biomarkers and potential diagnostic tool finally

[Billy Hanlon @bhanlon15]

"A Potential Blood Test for Chronic Fatigue Syndrome (ME/CFS)"

"The Raman Spectra analysis was able to differentiate ME/CFS, MS, and healthy controls with remarkable accuracy (91% specificity; 93% sensitivity for ME/CFS)."

https://t.co/mM178u4t3G

[Irish ME/CFS Association @IrishMECFSAssoc]

28/

May is ME Awareness month

You can help by sharing +/or liking this video

Teenager Ashleigh Lovett made a short (3 minute 28 second) film explaining M.E. Another teenager wore weights on legs & arms to partly experience ME symptoms
https://t.co/HFY6P5IwQt

Day 28 #PwME #CFS

[Tom Kindlon @TomKindlon]

On in less than 48 hours

#MEcfs #CFS #MyalgicE #PwME #LongCovid
(Fingers crossed third time lucky 🤞 with this tweet)

[danielle grilli @daniellegrilli]

@TomKindlon @NSU_INIM any ideas how we can increase this peptide now?

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

As a neurologist, I can tell you that "people with #chronicillness in general don't fake being ill, they mostly fake being well."

#MedTwitter #Dysautonomia #MECFS #LongCovid #EhlersDanlosSyndrome

[Carole Bruce @CaroleBruce17]

25% of #ME patients are bedbound, can’t walk and can’t take care of themselves. 75% are mostly housebound and can’t work. Most struggle with socialising. Scientists say #MECFS has been triggered in about half of #LongCovid cases. No treatment no cure.
#MyalgicEncephalomyelitis

[danielle grilli @daniellegrilli]

After nearly 20yrs fighting like hell w/ #MECFS , loved ones still suggest I’m not doing/aspiring/working hard enough - the loneliness of feeling misunderstood/struggling alone is palpable. For what it’s worth, I see u #neisvoid @benh_mecfs @MEcfsMom @KaiserMEneglect #LongCovid

[danielle grilli @daniellegrilli]

@twitchyspoonie Ableism is already hugely engrained. 20 years / #MECFS barely surviving as a freelancer. Dismissive docs, denied disability, the toxic “dog eat dog” mentality. My #ADHD #HSP #SPD child was traumatized out of public school. USA sees no value in us.

[Slate @Slate]

The movement may come to regret its rash decision to pick a fight with a multitrillion dollar pillar of international medicine. https://t.co/7dF3JfrFT3

[danielle grilli @daniellegrilli]

@Baybabe75 @JacobSchapira5 I’m 20 years #PWME viral onset and was severe for 18 1/2. I’ve tried everything. LDN & anti-viral rx have helped - I rarely have bedridden days now. Improved neuro symptoms. Dr Chia is hopeful about anti-viral drugs for #LongCovid and #MECFS . No way I’d manage FT work/school

[danielle grilli @daniellegrilli]

@MariaLorraine_ @sfchronicle @byabartlett @KaiserMEneglect @CADMHC @CMSGov @latimeshealth @NYTHealth @cmgrant @PermanenteDocs @MEActNet Trying to get care at Kaiser for #MECFS is a nightmare. They simply refuse to do it, point blank. After over 15 years of filing grievances, I was approved to see an ME specialist, but then they denied follow-up visits. I pay for my ME care out of pocket.

[Maria Lorraine @MariaLorraine_]

Kaiser Permanente, the healthcare provider with 13M members, is in a heap of trouble for denying mental health care IN ADDITION TO not providing medical care to a group of 130,000+ severely ill patients with the horrible disabling illness of #MECFS (what LongCOVID turns into).

[danielle grilli @daniellegrilli]

@Menopausemum @PhoebsBo What is the name of the antihistamine if you don't mind sharing ...

[danielle grilli @daniellegrilli]

@AtypicalPolioME @JosGilbertoMon1 @MissFlowerPixie Dr. Chia is my doctor - I have improved so much since I began to see him and take anti-virals. Still not recovered but so much more functional. I wish more doctors would follow his lead. He has been so good and supportive, I really can't say enough good things about him

[danielle grilli @daniellegrilli]

@dianaberrent NIH repeatedly denies funding for #MECFS research- refusing to fund studies by devoted scientists like Ron Davis @OpenMedF - They've been gaslighting millions of ppl w/post-viral illness for decades. Unless we all start screaming #LongCovid patients will join the #millionsmissing

[danielle grilli @daniellegrilli]

@MrkStdngr They will ignore #LongCovid patients just as they've ignored #MECFS patients if they can get away w it. The only way these post-viral illness will be addressed is if we collectively raise hell. 20 years of my life has been sacrificed to the gods of medical neglect and dismissal

[danielle grilli @daniellegrilli]

@Dan_Wyke So well said

[danielle grilli @daniellegrilli]

@AmbrosineShitr2 @loscharlos Exactly! Let's not beat around the bush - all us #pwME have had unrelenting #MECFS for years & decades - recovery cases are practically a miracle. Until post-viral illness is really researched and understood, folks with #LongCovid are just going to join our suffering ranks

[danielle grilli @daniellegrilli]

@DressFor_ME @latvala_tuuli @thane_black My doctor, Dr. Chia, tested me for Coxsackie- and Echovirus - both active viruses in my case. Of course, I couldn't get these tests through Kaiser Permanente. Took me 15 years to get a referral. But we know a lot of MECFS patients are dealing with a viral illness.