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veronicagray.bsky.social @veronicagray.bsky.social · 31/01/2026

I wonder if Trump’s success is because it’s hard to believe that anyone could be that brazen. We assume some standards are universal, apply to us all, but unfortunately they do not.

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veronicagray.bsky.social @veronicagray.bsky.social · 22/01/2026

It’s now being offered to 65 year olds in the UK. Might be a bit late for Trump, though, given his recent performances!

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veronicagray.bsky.social @veronicagray.bsky.social · 22/01/2026

I’m so glad there are doctors out there trying to help. Many conditions are treated successfully off label (including my own). While no one has “the cure”,there are low risk treatments that certainly help some with ME/LC (eg LDN, antihistamines) and patients should be given the option to try them.

veronicagray.bsky.social @veronicagray.bsky.social · 02/12/2025

To be honest I’ve mostly given up reading media comments on the chancellor, as objective discussion seems to be almost totally absent.

veronicagray.bsky.social @veronicagray.bsky.social · 30/11/2025

My daughter’s referral to our local Long Covid clinic has been refused twice because she is “too ill” for their service (probably true, they offer little). She has just been re referred. Feels like an endless case of pass the patient, with no help whatsoever (after 5 years)

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veronicagray.bsky.social @veronicagray.bsky.social · 09/11/2025

It’s good to see some recognition within the medical community of this obvious problem with RCTs

veronicagray.bsky.social @veronicagray.bsky.social · 02/11/2025

Disappointing, but tbh I’m not that surprised. The percentage of time in treatment is really quite low. Plus, while HBOT does significantly increase in amount of oxygen dissolved in the blood, it doesn’t increase oxygen in the RBCs, which carry most of the oxygen, by very much.

veronicagray.bsky.social @veronicagray.bsky.social · 31/10/2025

A major risk point is when you start to feel a little better. The desire to start doing things is overwhelming. This is how my daughter crashed so severely.

veronicagray.bsky.social @veronicagray.bsky.social · 30/10/2025

Absolutely. One of the best pieces on pacing is in one of Dr Myhill’s book called “patterns of recovery”. Sadly only realised this too late….

veronicagray.bsky.social @veronicagray.bsky.social · 30/10/2025

I can’t understand why they haven’t included the symptom scores at the time of enrolment. It would be interesting to know the illness severity of the two groups.

veronicagray.bsky.social @veronicagray.bsky.social · 07/10/2025

A combination of 1. An extremely hierarchical profession, suppressing questioning 2. Poor medical training, emphasising fact learning over reasoning and 3. A patronising attitude towards patients

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veronicagray.bsky.social @veronicagray.bsky.social · 27/09/2025

Maybe I’m missing something here, but if so, why are so many biomarkers in pw LC so different even at rest? For example my daughter’s venous oxygen levels are much, much lower than normal?

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veronicagray.bsky.social @veronicagray.bsky.social · 23/09/2025

Exactly, my daughter with severe ME/LC, is trying this diet for exactly this reason. As does a family friend who has severe epilepsy. They do it in-spite of the health risks, but when you are this ill the risk/benefit balance is very different.

veronicagray.bsky.social @veronicagray.bsky.social · 23/09/2025

The differentiation between National Insurance and Income Tax does seem to have lost its logic and benefits the better off. But I guess much of this would come from pensioners, the group most likely to vote, so can’t see this happening soon!

veronicagray.bsky.social @veronicagray.bsky.social · 09/09/2025

I’m so glad both of you were allowed to attend, and grateful to you both for advocating for patients with severe ME. I’m thinking Savannah and hope her situation will now improve.

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veronicagray.bsky.social @veronicagray.bsky.social · 02/09/2025

The current evidence base for FND is weak, so great caution should be used in its diagnosis and in keeping an open mind for other diagnoses. It is NOT an appropriate diagnosis for patients with symptoms associated with LC or ME.

veronicagray.bsky.social @veronicagray.bsky.social · 29/08/2025

As far as I can make out FND is just psychologising of illness again but rebranded, with the usual treatments of physiotherapy and psychology babble. This is despite overwhelming evidence of many physiological abnormalities in pw ME/cfs and LC. Makes me so angry

veronicagray.bsky.social @veronicagray.bsky.social · 29/08/2025

Absolutely need specialists in complex, multi-system diseases like ME/LC. At the moment just passed from pillar to post, with nobody taking responsibility.

veronicagray.bsky.social @veronicagray.bsky.social · 29/08/2025

There is a lot of evidence that many pw ME/LC have “inflammation” in the brain. And a subset have autoantibodies associated with autoimmune encephalitis (see recent International 2025 ME/cfs Conference talks). Also UCLH now have a Neuro Long Covid clinic.

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veronicagray.bsky.social @veronicagray.bsky.social · 28/08/2025

Isn’t it called a “functional neurological disorder” these days? (Unfortunately our local neurology department specialises in this)

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veronicagray.bsky.social @veronicagray.bsky.social · 28/08/2025

Thank you for your positive posts. It’s helping a keep a glimmer of hope during a very dark time.

veronicagray.bsky.social @veronicagray.bsky.social · 20/08/2025

Hello Yann. “Psychological research” is unbelievably bad in general, and in ME in particular. It wouldn’t pass muster in real science. Unfortunately this doesn’t prevent it being damaging though.

veronicagray.bsky.social @veronicagray.bsky.social · 24/07/2025

We know, but it just seemed ironic that yet another health care “professional” should say this on the day the new ME plan was published. Thank you for the guidelines link. You’re a ray of light in a sea of darkness!

veronicagray.bsky.social @veronicagray.bsky.social · 23/07/2025

I hope and pray that you are right, but after 5 years of trying so many treatments, it’s getting hard to believe. My daughter can’t feed herself, has constant malaise and a venous oxygen level of 10%. I was told today by an NHS nurse that it is psychological.

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veronicagray.bsky.social @veronicagray.bsky.social · 23/07/2025

The ME/cfs clinic my daughter was referred to was staffed by psychiatrists and physios who told me it is a psychological condition, recommended GET and refused to even help as she was “too ill”. The attitude of the medical establishment needs to change first.

veronicagray.bsky.social @veronicagray.bsky.social · 23/07/2025

It’s good that there is media coverage, but this report implies that many recover spontaneously from severe ME, but the evidence is quite the opposite.

veronicagray.bsky.social @veronicagray.bsky.social · 05/05/2025

It’s a terrible name, not only by trivialising the illness, but because it misleads doctors, who receive no training on it and don’t understand it, into thinking they do.

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veronicagray.bsky.social @veronicagray.bsky.social · 14/02/2025

It’s good to see the worlds of ME/cfs, chronic infections and Long Covid coming together and talented researchers collaborating like this. Thank you.

veronicagray.bsky.social @veronicagray.bsky.social · 22/01/2025

Thanks. My daughter has an oura ring (expensive, but accurate and comfortable) which measures average night/sleep HRV. Her values have remained stubbornly low (around 10 ms) too. She also has a continuous pulse oximeter (Viatom Checkme £125) which has proved really useful in monitoring treatments.

veronicagray.bsky.social @veronicagray.bsky.social · 18/01/2025

🤞 Is there a reason why you’re measuring your “awake” HRV average rather than night or waking?

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veronicagray.bsky.social @veronicagray.bsky.social · 14/01/2025

See Perry Lindstrom’s (slightly) expanded explanation to understand why both can be true

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veronicagray.bsky.social @veronicagray.bsky.social · 07/01/2025

Thank you for making this video, especially considering how much it must have cost you. It’s so hard to explain severe ME to others, and you explain it so well.