@veronicagray.bsky.social
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)
November 30, 2025 at 1:44 AM
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)
It’s good to see some recognition within the medical community of this obvious problem with RCTs
November 9, 2025 at 6:45 PM
It’s good to see some recognition within the medical community of this obvious problem with RCTs
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.
November 2, 2025 at 9:24 PM
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.
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.
October 31, 2025 at 5:08 PM
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.
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….
October 30, 2025 at 10:16 PM
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….
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.
October 30, 2025 at 10:06 PM
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.
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
1. An extremely hierarchical profession, suppressing questioning
2. Poor medical training, emphasising fact learning over reasoning and
3. A patronising attitude towards patients
October 7, 2025 at 8:43 PM
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
1. An extremely hierarchical profession, suppressing questioning
2. Poor medical training, emphasising fact learning over reasoning and
3. A patronising attitude towards patients
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?
September 27, 2025 at 7:24 PM
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?
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.
September 23, 2025 at 7:11 PM
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.
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!
September 23, 2025 at 6:51 PM
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!
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.
September 9, 2025 at 12:38 PM
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.
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.
September 2, 2025 at 12:21 PM
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.
Have just donated. Thanks for sharing
August 31, 2025 at 2:17 PM
Have just donated. Thanks for sharing
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
August 29, 2025 at 4:33 PM
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
Absolutely need specialists in complex, multi-system diseases like ME/LC. At the moment just passed from pillar to post, with nobody taking responsibility.
August 29, 2025 at 3:32 PM
Absolutely need specialists in complex, multi-system diseases like ME/LC. At the moment just passed from pillar to post, with nobody taking responsibility.
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.
August 29, 2025 at 1:46 AM
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.
Isn’t it called a “functional neurological disorder” these days? (Unfortunately our local neurology department specialises in this)
August 28, 2025 at 7:49 PM
Isn’t it called a “functional neurological disorder” these days? (Unfortunately our local neurology department specialises in this)
Thank you for your positive posts. It’s helping a keep a glimmer of hope during a very dark time.
August 28, 2025 at 7:44 PM
Thank you for your positive posts. It’s helping a keep a glimmer of hope during a very dark time.
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.
August 20, 2025 at 7:34 PM
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.
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!
July 24, 2025 at 9:56 PM
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!
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.
July 23, 2025 at 10:44 AM
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.
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.
July 23, 2025 at 4:42 AM
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.
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.
July 23, 2025 at 4:23 AM
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.
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.
May 5, 2025 at 3:44 AM
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.
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.
February 14, 2025 at 10:14 PM
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.