What is it like to take lecanemab? I explored this for
@theipaper
, speaking with Cheryl and David Essam, who was has been receiving the drug for 4 years as part of a clinical trial, after being diagnosed with Alzheimer's in 2016
In England and Scotland alone, there are now an estimated 750,000 people with
#longcovid
who have been chronically ill for more than 3 years, figures which demonstrate the desperate urgency for more effective treatments
My
@Telegraph
long read
Delighted to have my first byline in the
@newscientist
on a new study which has identified the first genetic risk factors for
#MECFS
.
Thanks to
@precisionlifeAI
and
@CGATist
for sharing their thoughts on this
Healing damaged mitochondria, the energy factories which produce the fuel our cells need to survive, might provide a treatment option for some
#LongCovid
&
#MECFS
patients
My
@guardianscience
story on new clinical trials taking place
Alzheimer's research has long focused on plaques in the brain but we've never found the smoking gun - what causes them to form in the first place?
Some think the answer could be bacteria or viruses and their ideas are gaining ground
My story:
Thank you to everyone sharing my Telegraph story on Long Covid
One of the reasons I wanted to write it is because while the UK was ahead of many nations in recognising LC in 2020, this has now gone into reverse
Two years ago, I first heard about a fascinating idea which could lead to a completely new way of thinking about and treating
#LongCovid
and
#MECFS
- both conditions bear remarkable similarities to people experiencing post-concussion syndrome
Full story:
I spoke to people working in
#LongCovid
clinics around the world from Bangladesh to the US & the trend was always the same. Somewhere between 60-80% of patients were women.
This same pattern has been seen in
#MECFS
, chronic Lyme etc, but has long been understudied
Vagus nerve stimulators are currently being promoted everywhere in the wellness industry. I was initially sceptical but when I dug a little deeper for
@Telegraph
I discovered some absolutely fascinating trials which are underway. Read more:
It's really sad that this is the reaction to my PSSD story from some psychiatrists
Plenty of evidence going back 30 years showing that SSRIs can cause long term sexual dysfunction. Yet rather than investigating why this happens, some doctors choose to respond like this
Long Covid is far from the only time a virus has caused chronic symptoms. We've also had Long SARS, Long Ebola, & Long Flu.
These past outbreaks could provide us with vital clues about why Long Covid is happening & how to treat it.
Me for
@BBC_Future
Glad to be able to share a story I've been working on for some time.
More than 80m antidepressants were prescribed by the NHS in 2023. But some people develop a devastating condition called post-SSRI sexual dysfunction (PSSD)
We need more awareness
I spent several months speaking to scientists & doctors around the world about
#LongCovid
. Several things emerged.
1. The majority of people do recover within a yr. Some symptoms are easier to treat than others - there are effective protocols for tackling dysautonomia/allergies
Over the past couple of months I've been working on this
@Telegraph
feature - looking at the thousands of people who have developed severe long-term cognitive problems as a result of being on
#benzos
for many yrs/decades
Will the Olympics lead to a major new Covid wave?
With the latest Omicron subvariants finding new ways to escape the immune system, some scientists have already blamed Euro 2024 for the latest summer surge around the continent
See my new BBC piece:
I think we are scratching the surface of what post-viral / post-infection conditions look like, this is very compelling and seems like a lot of overlap with what we might know about viral persistence in
#LongCovid
If these genetic findings are replicated in the new
@DecodeMEstudy
which has just launched, it could be a major breakthrough for
#MECFS
and even
#longcovid
, helping to accelerate research looking into new diagnostics and much needed treatments for patients
Akiko Iwasaki (
@VirusesImmunity
) at Yale is now trying to see whether some female Covid patients have a greater propensity to produce autoantibodies that attack different tissues, than men. If true, that could be illuminating
Almost all of us are infected with Epstein-Barr virus before the age of 20. In most people it lies dormant, but in some, it can cause cancer & MS.
We're starting to understand more about what hidden viruses do to the body. My piece:
I've covered
#mecfs
for many years and until the
#LongCovid
crisis, it was too often a similar story - patients being told that their symptoms weren't real, being neglected, ignored and often gaslit when they tried to get help
2. But there are also a sizeable proportion of people who still remain ill more than a year later. Cognitive issues/fatigue seem to be the most persistent & troubling symptoms, while others go away with time.
These
#LongCovid
patients are likely to have
#MECFS
Benzodiazepines are among the most widely prescribed drugs in the UK.
But what doesn't tend to get reported is that many patients quickly become physically dependent on the drugs, which can go on to wreck their lives.
My latest in the
@Telegraph
@RenzPolster
We now know that many viruses which invade the brain, including SARS-CoV-2 can latch onto receptors in the brainstem.
In the case of Long Covid and some MECFS patients, it could be that the brainstem has been impacted by either a viral infection or an excessive immune reaction
Over the last few wks
@mirandalevycopy
& I have been working on this feature on one of the most devastating (and little understood) side effects of SSRIs - sexual dysfunction, a major patient safety issue
One sufferer was brave enough to share his story:
@newscientist
@freelancingfor
I was absolutely delighted to see my Guardian & Observer story on SSRIs and the risk of permanent sexual dysfunction recognised in the Best Investigation shortlist, as this is an issue which impacts many people all over the world.
#COVID19
barely makes the news these days, but it's still causing a surprising number of deaths. In 2022, the virus killed around 47k people in the UK.
Who are they and why is the virus still causing fatalities? Me for
@BBC_Future
#CovidIsNotOver
There are potential treatment options out there. But different
#longcovid
patients are likely to have different underlying causes. There's an urgent need for clinical trials which attempt to stratify the patient population
@RenzPolster
In the eyes of
@RenzPolster
, this all points to a new mechanism. In many cases, Long Covid, Long Concussion and ME/CFS likely result from a trauma to the brainstem, a region at the base of the head which coordinates connectivity in the brain
But given the scale of the crisis with millions of people being long-term chronically unwell, hopefully we'll start to see more action, otherwise this will only continue to accelerate into an economic and public health disaster
@RenzPolster
This suggests we need more studies using imaging to examine the brainstems of these patients.
It could also point to new treatment paradigms. Some psychedelic drugs (ibogaine, psilocybin etc) are known to modulate brainstem function. Could this be explored in a clinical trial?
One of the great frustrations of this is that many scientists feel we're on the verge of finally being able to get some effective treatments
From antivirals to anticoagulants to immune modulators, there are all kinds of possibilities.
There's some fascinating pieces on this recently, such as this
@ConversationUK
essay in Nov from Ruth Itzhaki, who has done more than anyone else in the last 40 years to identify a connection between herpes viruses & Alzheimer's
Reactivation of an underlying infection is thought to be one of the causes of
#MECFS
. Some doctors have had success reversing symptoms by treating these patients with antivirals, particularly those which work against Epstein-Barr/herpes viruses.
Like many scientists in this field, Itzhaki's findings were neglected & ignored for many years but interest is starting to grow
@ColumbiaMed
are currently running a clinical trial (set to finish early in 2024) looking at whether a herpes antiviral benefits Alzheimer's patients
Yet scientists are struggling to get the funding they need to launch the kinds of studies and trials which can really pinpoint which patients they will work for and demonstrate the kind of effectiveness needed for regulatory approval
There are 3 main theories for why
#LongCovid
occurs. (a) Chronic viral reservoirs - this has been seen in Long Ebola/SARS (b) Development of an autoimmune disease (could explain why
#LongCovid
patients are mainly women) (c) Reactivation of an underlying infection
The UK started some of the world's first Long Covid clinics but their long term future is far from guaranteed with funding streams.set to expire in March 2025
And while 19 multi-year studies into Long Covid were launched, these all finished in June
I understand more, I contacted
@RenzPolster
, who has spent many years studying
#MECFS
.
Like the Stanford professor Ron Davis, who I'd interviewed some years earlier, he had noticed many
#MECFS
patients have abnormalities in how the head is supported
Some people have speculated that vulnerability to
#LongCovid
could be exacerbated by microbiome dysfunction. Again some
#MECFS
doctors have had success in treating patients for a leaky gut. David Kaufman in California says 80% of his patients have a leaky gut
'Long Concussion' is perhaps best known for affecting professional rugby players but it can impact anyone who has suffered a mild/moderate blow to the head
But when scientists applied concussion protocols to
#longcovid
patients - it also suggested they had experienced TBI
I think one of the key clues is that we see exactly the same trend with autoimmune diseases. Some studies show that 80% of autoimmune disease (MS, type 1 diabetes etc) patients are women.
The whole PSSD community owes a huge thank you to
@ROSIE_PSSD
for her advocacy efforts. She’s accomplished some amazing awareness wins recently and is an incredibly brave and outspoken advocate.
One of the reasons why
@ColumbiaMed
Prof Davangere Devanand managed to get a NIH grant to run this trial is because Alzheimer's scientists are running out of options
Billions have been spent targeting plaques in the brain but this has never been shown to actually help patients
@DrDavidACox
Patients have put together a grassroots effort to support Belgian research into a biomarker/viral load test for viral persistence of sars2 so potential treatments can be evaluated appropriately (not just via symptoms). Please read & consider sharing.
I'd like to thank
@tvi
, Portugal's no.1 TV channel for covering the dangers of SSRIs and reporting on the number of patients who have been harmed by antidepressants in the below short documentary
We need to continue raising awareness.
@PSSDNetwork
@RenzPolster
Thank you so much to
@RenzPolster
and
@iamavroudis
for discussing this for the story.
Please do share the piece - it's a fascinating idea which has been under-researched so far
PSSD represents an example of drug-induced harm which is still little understood. There is virtually no funding available to understand why PSSD develops and identify potential treatments which may reverse these symptoms.
For this story I spoke with hundreds of Long Covid patients, who described the extreme limitations of the current care system
Many Long Covid clinics in the UK are not doctor-led so patients are merely given talks from physics and occupational therapists and then discharged
Last year
@PutrinoLab
published an interesting study showing that it's possible to correctly classify LC patients from overlapping conditions using AI on hormone & immune cell levels. This could represent the future, making it easier for patients to get an official diagnosis
This is a really good point. Could well be one of the reasons why
#LongCovid
&
#MECFS
, among other chronic illnesses, appear to be more prevalent in women
@DrDavidACox
@VirusesImmunity
One thing to consider is “
#autoimmune
” diseases are increasingly connected to
#viral
activity. For example, this team found that Epstein Barr
#Virus
protein EBNA2 and its related transcription factors can bind and activate human genes associated with the development dozens of...
@roslininstitute
As this great piece from
@devisridhar
points out, we need to plan well for all these eventualities and show that we've learnt some of the lessons from Covid.
Lives can be saved, but we need to get better at anticipating pandemics rather than reacting.
@np9000
Yes that's really interesting. In some ways HIV has given us a lot of evidence of this too - a virus staying in the body for decades and ultimately causing cognitive problems.
Could be true for many neurotrophic pathogens
Resharing my piece from earlier this month for
@NatGeo
on the vaccine alternatives being developed for people without functioning immune systems, in case Covid-19 vaccines don't work
The few scientists who have studied PSSD believe that it occurs due to epigenetic changes within the genital tissue.
Given rising number of antidepressant prescriptions, there is a desperate need for better ways to identify risk of PSSD and treatments for those affected
But not everyone is fortunate to even get referred to a Long Covid clinic. Due to the lack of diagnostic tests, patients are often misdiagnosed with depression, anxiety and chronic pain.
There is a hope that AI can help address this issue but no one quite knows the timescale
For while the new Alzheimer's drug lecanemab has received lots of attention - it targets amyloid plaques perfectly - but offers only minimal benefits to patients
As
@Dereklowe
writes in this great blog, this shows that maybe it isn't the right target
Graded exercise therapy was based on an outdated belief that many
#MECFS
cases were psychosomatic despite increasing evidence in the past 20 yrs that the majority of cases were actually post-viral syndromes
I wrote about this in 2016:
Of all the addictions, ultra processed food addiction has floated beneath the radar.
But
@DoctorChrisVT
,
@addunplug
and others are looking to change this.
I wrote about why UPFs are so addictive and what we need to do about it for
@Telegraph
Akiko has also been a major campaigner to try and help the millions of patients worldwide battling
#MECFS
. She suggested that one biological similarity with
#LongCovid
could be the presence of microclots, impairing oxygen exchange in tissues.
This could contribute to the fatigue
Putrino and
@VirusesImmunity
have evidence to show that in a certain % of LC patients, the illness is an autoimmune disease caused by autoantibodies
This suggests that many patients could benefit from targeted immunotherapies which look to switch off these autoantibodies
'Paxlovid Rebound' doesn't really seem to be related to Paxlovid itself.
Rebounding seems to be quite common, one study found it occurred in 27% of Covid patients, regardless of whether they received Paxlovid or not
My latest
@Telegraph
piece on the dangers of energy drinks for children.
With one primary school child suffering a cardiac arrest after drinking a can of Prime Energy last week, many feel the government needs to finally act and ban them for under 18s
Akiko has been responsible for so many breakthroughs in understanding how the human body responds to
#COVID19
over the last 3 yrs.
She's now leading this clinical trial looking to see whether a 2wk course of Paxlovid can help
#LongCovid
patients
Great to see the reaction to my
@guardianscience
mitochondria piece & thank you to everyone who has tweeted/followed me over the last day
Below is a quick thread summarising some of the ideas/interesting things I found when researching this piece
1/
Increasing evidence coming out of China that the blood of
#COVID19
survivors can be used to help critically ill patients. 19 clinical trials now taking place around the world, inc a major one in Italy which spans the entire country. My story for
@WiredUK
In the next 7 yrs, I expect that
#mRNA
(the tech behind several
#CovidVaccines
) will go on to transform cancer treatment, providing new options for some of the deadliest cancers.
My
@guardianscience
&
@ObsNewReview
feature:
Last week I wrote this piece about male fertility and the many surprising myths which surround it.
But with antidepressant prescriptions on the rise in the UK, I wanted to highlight emerging research showing how these drugs can impact fertility
@EmilyGreyPSSD
Hopefully it helps raise awareness of the need to fund researchers looking into this. Some interesting case studies of potential therapies but there needs to be trials!
At the moment, most therapies for LC still merely attempt to mitigate the symptoms (antihistamines for mast cell activation or heart medications for autonomic symptoms). Progress in developing actual treatments has been slow but there are a few encouraging signs
Having researched schizophrenia for my PhD, I was intrigued by the Phase 3 trial success of KarXT - a treatment which may become the first genuinely novel drug for the disease in decades
My
@ObsNewReview
piece:
Genetics has changed healthcare in the last decade, but white Europeans currently make up 86% of all genomic studies. Data from entire ethnic groups is missing.
Why is this, what are the implications and how can we do better? My story for
@BBC_Future
?
Pre-eclampsia and gestational hypertension are two very common
#pregnancy
complications, but we know very little about them. A new genetics study has helped to shed some light - my report on a fascinating new paper from
@mchonig
for
@newscientist
After this week's chilling report from
@DrGaryFuller
&
@imperialcollege
on how air pollution affects our health throughout life (even before birth!), I did this
@Telegraph
story looking at some of the ways in which we can reduce our pollution exposure
@VirusesImmunity
However because Long Covid is so complex and there are so many different subtypes, a single 1 stop treatment for all patients is unlikely. Instead the future seems to be various combination therapies which target different symptom clusters
@VirusesImmunity
One of the major challenges going forwards is to try and understand why some patients respond v well to certain interventions and other don't at all.
Eg: 50% of patients in 1 trial found that a combo of alpha lipoic acid and coenzyme Q10 for 2 months reduced their fatigue
So devastatingly sad. We need to do more to help the many people who have been chronically ill for the past 4 years, as well as all those being newly diagnosed with LC.
And I remain hopeful that potential treatments will also help the many people with
#MECFS
@DrDavidACox
@Telegraph
Its over 4 yrs for me, March 2020. All my plans for retirement after 50yrs a Nurse gone. Physically, psychologically, financially and socially disabled trying to find a way to recovery . A devastating price to pay for Government and Health Authorities bungling
#LongCovid
@np9000
@LongCovidHell
@guardianscience
Almost certainly. I think it could play a role in all post-viral conditions where fatigue/brain fog are symptoms. Either the virus/parasite itself disrupting something in the mitochondrial machinery, or the body's inflammatory response damaging the mitochondria
@markhoro
After 10 years on temazepan, Anna did eventually manage to quit the drug after a traumatic 18 month tapering process.
But she's been left with permanent neurological damage which has left her unable to work, barely able to leave the house and suffering from multiple ailments
@VirusesImmunity
Ultimately we need better ways of screening patients to identify who will be likely to benefit and who might even be at risk from these treatments.
Especially as some are v expensive and many patients can't afford to take the financial risk on something which may/may not work
For decades Katalin Kariko was dismissed and ignored. Now more than 40 yrs after she began working on mRNA, her work has led to the 1st approved
#COVID19
vaccine
My
@WiredUK
piece on a remarkable story on perseverance in the face of adversity
The next pandemic is almost certainly only a few years away
Since 2000 they've been occurring roughly once every decade from SARS to swine flu to Covid-19.
What's coming next? Quite possibly bird flu, and we're not as prepared as we could be
New piece:
History has a habit of repeating itself. From SARS to
#COVID19
, the world has now seen 3 major coronavirus outbreaks. But this time, scientists are already planning to try and prevent the next one
My feature in the latest issue of
@WiredUK
By 2030, the mental health app market is predicted to be worth £13.8 billion!
But despite the vast numbers of platforms being developed, do they actually help patients or are some of them even causing greater harm?
My
@ObsNewReview
piece:
My interview with 11-time women's world
#Snooker
champion
@evans_reanne
about her quest to qualify for the men's world championships and the vast discrepancies which still exist between the women's game and the professional equivalent
@tryna_do_rite
@TaylorLorenz
It's not a given. Keeping your immune system strong into later life through diet, staying active, maintaining a social circle can mitigate risk of Alzheimer's
A decade on from the ice bucket challenge which raised $220 million, did it lead to anything for ALS?
That's one of the topics I touched on in this
@Telegraph
feature on the disease.
While a cure is a way off, new treatments are starting to emerge
@VirusesImmunity
For example, we seem to be getting closer to an effective treatment for fatigue through various drugs/supplements which attempt to heal damage to the mitochondria, either from the virus or the immune system.
The antihistamine famotidine also seems to help brain fog in some ppl
Finally thanks to
@PSSDSimon
for working with us on this piece and being brave enough to share his story.
Hopefully it can lead to more research into
#PSSD
and other indications of drug-related harm
While benzodiazepines are not meant to be taken for > 28 days, it gets very complicated.
As
@HamishMcAW
explained to me, people become rapidly dependent on benzos for insomnia, anxiety & stress.
This means they keep getting prescribed them, to manage their condition