1 in 3 Covid patients get neuropsychiatric problems....

peabay This is the update I was hoping for! As I know how your daughter feels, I was praying that she too would get some relief from the vaccine.

Here's to hoping with each passing day the clouds part and things get better and better for her!!

Wow! I’m so glad to hear that for your dd and hope that the vaccine can have a similar effect on so many that are suffering. Great update. ❤️

FOR PARENTS OF CHILDREN WITH LONG COVID

I would like to highlight ( with a note of concern ) funding of a clinical trial

Stevenson Terence PI. Crawley Esther Co-A. Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study )

www.bristol.ac.uk/academic-child-health/grants/

I think it is of concern that one the researchers for this trial on children with Long Covid ,Esther Crawley has also done a previous clinical trial on children with ME/CFS called the lightning process.
That particular clinical trial has raised concerns, so much so, that health policy makers in the UK ( NICE )are now instructing doctors NOT to follow it’s recommendations.

(Medical recognition of overlaps with ME/CFS have been drawn by DR Fauci from the National Institute of Allergies and Infectious diseases USA and the National Institute of Clinical Excellence UK )

Here is a link to Esther Crawleys clinical trial called the lightning process on children with ME/CFS published in the British Medical Journal.
adc.bmj.com/content/103/2/155

This study has since been evaluated by the NICE guideline committee ( draft Nov 2020 ) and now instructs doctors not to offer treatment based on the lightning study to children
Here is a link to those guidelines together with an excerpt under THE DO NOT ..... section.

BEGIN
www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline
24 1.11.16
Do not advise people with ME/CFS to undertake unstructured exercise that is not part of a supervised programme, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.
Do not offer people with ME
any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).

END


Lettuce back - 
It is important for families with long covid to be aware of the influence of researchers on Long Covid that have also influenced ME/CFS treatment. Both Esther Crawley and the PACE trial researchers have had their treatment recommendations dropped from the recently drafted new guidelines from the National Institute of Clinical Excellence dated Nov 2020 as linked above.

Below I have included some extracts from a transcript of a Westminster Hall parliamentary debate. It discusses how the Mum of a now sadly deceased daughter attributed her deterioration and subsequent death to damaging treatments from a clinical trial called PACE.
I would also like to express my condolences to the Croft family
and hope that they don’t mind me highlighting the tragedy of what happened to their daughter, in an effort to protect others .

BEGIN
hansard.parliament.uk/commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch

Because of the misunderstanding of the condition, the treatments available are often more damaging to the person than no treatment at all.

Merryn Crofts was just 15 ...she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound. She was eventually diagnosed with ME. This once bright young woman was forced to wear an eye mask and suffered from severe migraines, brain fog, slurred speech and persistent infections. Stomach problems and difficulties swallowing meant that her weight plummeted to just 5½ stone. Merryn was eventually fitted with an intravenous nutrition line but was given a terminal diagnosis in 2016.

Merryn died on 23 May 2017, just days after her 21st birthday.

Why is the treatment for people with ME so poor? The lack of understanding shown by some healthcare professionals of a person’s suffering is one of the greatest frustrations to the ME community. Much of that stemmed from the publication of the controversial PACE trial. The treatments investigated in the PACE trial were based on the hypothesis that ME patients harbour “unhelpful” convictions about having a disease and that the continuation of their symptoms is the result of deconditioning.

Indeed, from all of us. Merryn met all the diagnostic criteria set by NICE, and the Canadian consensus criteria, for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. Merryn was totally bedbound. She physically could not get out of bed. She suffered so badly from postural hypotension that she blacked out if placed in a sitting position or even if her bed was raised slightly. She was hypersensitive to noise, light, touch and movement. She suffered so badly from pain—head, muscle, neurological and stomach pain—that she could not get out of bed. Her GP had worked in a hospice for 10 years, looking after cancer patients, and said that in that job she could not always take away pain, but she could manage it. In Merryn’s case, the GP said that her pain was unmanageable. Although Merryn was on diamorphine and ketamine, she was still in pain. Any kind of stimulus, even just a nurse walking in to the room, was an exertion to Merryn. She was permanently on syringe drivers and receiving injections. She was permanently nauseous.

Merryn was only 15 years old when her illness started. For the first year, she was not housebound and she used to go out in a wheelchair, but as her condition worsened she became unable to go out. She went from a young girl who loved life, with passions for drama and acting, to a housebound patient, whose family had to do more and more for her, even things like chatting on her behalf on social media—simple things that she was no longer able to do on her own.

Merryn’s mum is critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it. She tells me that Merryn thought she could push through the condition and keep going, although her family really wanted her to slow down.
Merryn’s mum feels very strongly that had Merryn been given that advice when her condition started, she might not have gone on to develop severe ME, and she strongly urges that the NICE guidelines should be reviewed. Merryn’s mum said,

“If the PACE trial were a drug, it would have been banned by now.”

In comparison, ME is not seen as a death sentence, but, as Merryn’s case sadly shows, it can be fatal. It is also described as a kind of living death.

We also need to invest more in training for our doctors, especially general practitioners who are the clinicians likely to be the first port of call for those suffering with ME.

END

Lettuce here, since the parliamentary debate above things are changing but we are not out of the woods yet.
The good news is that after a petition in 2017 from many thousands of patients the NICE guidelines were accepted for review.

www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision

In November 2020 a new provisional guideline was published which has done a complete U turn on the old guidelines and actually instructs Doctors not to prescribe exercise or use cognitive behavioural therapy for this particular disease due to a worsening of symptoms .

It won’t be until August 2021 that the new guidelines will be officially published after which Doctors will obliged to follow to follow the new guidance.

Until then people are still at risk of inappropiate treatment , there is also concern that the new draft guidelines may change course despite the progress made. Both the British Medical Journal and the Lancet in the past have championed and published the research that many people feel has been harmful, it has been an ongoing debate .We will have to wait until August 2021 to see what happens. 

The reason all this is still pertinent is because this group of particular researchers are now becoming involved and influencing long covid treatment. People with Long Covid deserve better and I feel that research needs to be accurate and completely honest about whether ineffective / harmful. 

here is a newspaper article with Merryn’s family , they also went on to be featured in a BBC documentary, and then appeared on BBC breakfast after the inquest.

www.rochdaleonline.co.uk/news-features/2/news-headlines/117790/heartbroken-family-tell-of-how-daughter-slowly-died-after-battling-me

edited to add BEGIN and END have been used to denote areas that I have been unable to italicise as quotes because it keeps going wrong

My hair has been falling out in clumps daily since Covid. Luckily I have very very thick hair so I have some to spare, but now it’s noticeably thinning. The first few chunks that came out in the shower scared me I thought something was crawling down my back and leg. Now it’s sadly a daily occurrence.

JOURNAL DE MONTREAL CANADA


Long covid and ME/CFS covered in Canada dated Feb 2021 


www.journaldemontreal.com/2021/02/19/encephalomyelite-myalgique-quarrivera-t-il-aux-patients-post-covid


translate.google.com/translate?hl=en&sl=auto&tl=en&u=https%3A%2F%2Fwww.journaldemontreal.com%2F2021%2F02%2F19%2Fencephalomyelite-myalgique-quarrivera-t-il-aux-patients-post-covid

FOR PEAS THAT HAVE HAD IMPROVEMENT AFTER VACCINE

this research article puts forward a possible theory why , it is currently awaiting peer review before publishing and here is a link to the preprint. It is way above my head in understanding the science so I have no idea what it means or whether it is accurate or not but thought it might be of interest for Peas that are better at this than me, especially those with Long Covid that found improvement after receiving a vaccine.

www.medrxiv.org/content/10.1101/2021.04.11.21255153v1

This shows just the abstract page to begin with but there are more details in the full text tab

called

Vaccination boosts protective responses and counters SARS-CoV-2-induced pathogenic memory B cells

I’m so glad to hear that she and your step mom are still making improvements! 🥰 Such a huge relief for you all, I’m sure. She didn’t know if people were seeing improvements in that after the vaccine though when I asked, so I’m glad that that anecdotally that also seems to be the case. I mentioned your daughter to my hairdresser. She was on the fence about the vaccine, and I talked about how perfectly healthy 18 year olds were dealing with substantial and debilitating long haul Covid symptoms from mostly asymptomatic infections, so it’s not something to mess with. People tend to think if it as an old persons disease - and I think combined that with our discussion over hair loss I at least gave her food for thought to consider getting it. She’s not adverse to it, just felt as a younger person she didn’t really need to.

This is an awesome update! I'm so glad she's feeling better!

Thanks Ashley, that’s interesting - and I guess not really surprising given how novel this virus is.

A LITTLE BIT OF HOPE ....

“We are cautiously optimistic that early Ampligen treatment of post-COVID-19 patients with Long Hauler chronic fatigue will have the potential to induce a clinically beneficial outcome.”

AIM ImmunoTech Announces Availability of the ME/CFS Clinical Trial of its Drug Ampligen for Enrollment to COVID-19 ‘Long Haulers’Institutional Review Board Authorizes Public Notification for Potential Enrollment of Subjects.

www.biospace.com/article/releases/aim-immunotech-announces-availability-of-the-me-cfs-clinical-trial-of-its-drug-ampligen-for-enrollment-to-covid-19-long-haulers-institutional-review-board-authorizes-public-notification-for-potential-enrollment-of-subjects/?keywords=Ampligen

Your articles and information have been very interesting to read. Thank you for posting them! I am a researcher and reader when it affects me or a loved one, so I do understand your dedication and enthusiasm. Your hardwork has not gone unappreciated!!