Dr Nicola Clague-Baker @ClagueNjc36 Twitter profile

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Dr Nicola Clague-Baker

17 days

Can't believe it's been 5 years. Proud to be part of this wonderfully dynamic, caring and determined group of #physios . Here's to another 5 years supporting #pwme and educating the #physio world.

Physios For ME

@PhysiosForME

17 days

We're celebrating our five year anniversary! 🥳😊

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Dr Nicola Clague-Baker

@ClagueNjc36

9 months

1. Yesterday I sat with my friend who has had #ME for over 30 years while she had an online appt with an #ME consultant. She felt listened to, he asked all the right questions, he prescribed medications that she has never been offered before (though she's asked for them)

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Dr Nicola Clague-Baker

@ClagueNjc36

9 months

3. This is what medics should be trained to do. #pwme should not have to pay privately to get this expertise. It has taken her many years to find a consultant who can help. There should be many more. Let's hope her GP learns from this. @DoctorsWithME @thecsp @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

We need a reply in the Lancet. We all agree how ridiculous this is, plus a repeat of history. But shouting into twitter is not enough. We need to make sure a strong reply has the same audience @davidtuller1 @keithgeraghty @microbeminded2 @VirusesImmunity @JanetDafoe

Eric Topol

@EricTopol

2 years

A new explanatory model proposed for #LongCovid @LancetRespirMed "an embodied condition with heterogeneous biological, psychological (experiential), and social (or environmental) factors integrated in complex relationships"

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Dr Nicola Clague-Baker

@ClagueNjc36

9 months

2. Doxycycline, acyclovir, LDN and B12. She's worried about trying them all at once but she knows she responds positively to doxy He listened to me when I highlighted issues we have identified with her Vo2 and Vco2 in supine and suggested an echocardiogram. She now has a plan

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

We need better scans of the brain too, to see what's happening there. Is it hypoperfusion, inflammation, mitochondrial dysfunction, circulatory or a mixture of everything? @PhysiosForME

Long Covid: Hidden lung damage spotted on scans

A study detected abnormalities in people who had had Covid but did not need hospital treatment.

www.bbc.co.uk

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

My dad said recently he's had severe brainfog since #covid19 last year. He's 85 so easily confused with dementia. He does not have dementia before #longcovid he was v cognitively able, still doing work as an architect. How often is this happening with the elderly @MichelleBull4

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

1. For anyone that doesn't believe in #ME or thinks it's just psych or decondition. My friend who has had #ME for >30 years managed to sit in the car to N Wales. The next day walked 10m to take a dip in a cold stream. First time I'd seen her so happy for years. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

Another person with #longcovid referred to neurology. They have sign BP rises on 10 min st test with sign symptoms including loss of balance and visual disturbances. Neurologist says MRI normal so do they want to be referred to the psychiatrist. #pwlc distraught.

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

My friend has had #ME for over 30 years (why I got involved in ME) lives on her own and has minimal carer support. She was so upset yesterday as the carers had changed and they are so unaware of her issues. 'Oh it's only fatigue'. She's having to educate again. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

1. Heart Rate Monitoring It appears that some #physios have not understood the concept of #hrm for #pwme and #longCOVID 1. It is a tool to understand the person's response to any activity 2. A limit can be set to prevent people going over their anaerobic threshold @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

I am an #ME researcher and have never been harassed by #pwme . I find #pwme the most helpful, informative, enthusiastic and caring people I have ever worked with. @PhysiosForME

Katie As

@ka_ashy

3 years

Frustrating GP call today where he volunteered to discuss how “chronic fatigue” was tricky, with varied opinions & how he read in the BMJ that researchers have been harassed out of their field by patients… I tried to set him straight but it’s hard on the spot & now drained/upset

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

Long COVID is not a functional disorder via @OSFramework

Long COVID is not a functional disorder

A Response to Call for “A New Paradigm” for Long COVID in Lancet Respiratory Medicine

osf.io

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Having worked on research related to #ME I can say that the #ME community are highly supportive of appropriate research and a joy to work with. As a researcher, it is so important to listen to the people with the condition. They know their condition. @TheTelegraph__ @PhysiosForME

KarenLesliePhysio

@karenphysiocouk

3 years

These "militant medics" are relentless in their campaign to publicly disparage an entire patient community and get in the way of researchers trying to improve patient lives. As ME affects more women, there is an underlying medical misogyny here too.

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

4. #ME is a serious multisystem disease that robs people of their lives. We need to listen, take it seriously, do more research, find treatments and ultimately a cure. I want all #pwme to look like this all the time not worrying about the consequences of the slightest exertion

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Good luck to all #ME advocates attending the @NICEComms roundtable today. We know you have all worked so hard to improve the guideline. Thank you. @MEAssociation @tymestrust @s4me_info @actionforme @MEActNetUK @MEResearchUK @METrustUK

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Dr Nicola Clague-Baker

@ClagueNjc36

11 months

So pleased this is finally published. Thanks to all the #pwme who took part. Thank you also to @MEAssociation for funding, @LivUniHealthSci for your support and @sarahftyson @helendawes2 we couldn't have done it without you @PhysiosForME

Home-based testing protocol to measure physiological responses to everyday activities in ME: a...

Individuals with Myalgic Encephalomyelitis (ME) have shown altered physiological responses during maximum cardiopulmonary exercise testing. However, maximal testing is not representative of the eve...

www.tandfonline.com

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Dr Nicola Clague-Baker

@ClagueNjc36

5 years

1. This year I will be adding #ME to the @uniofleicester @UoLPhysio physio neuro curriculum for the first time. I plan to include HR monitoring, discussing the harm of #GET and importance of different treatments for different severity. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

@PaulGarnerWoof 1. Really pleased that you have recovered @PaulGarnerWoof but please don't indicate that #pwme have the wrong beliefs or should push themselves like you have done. Too many have tried and not been as lucky as you. Too many have had their life completely torn apart @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

So our letter to @TheLancet was v quickly rejected. I wonder how many more have been rejected related to this commentary.

Dr Nicola Clague-Baker

@ClagueNjc36

2 years

We need a reply in the Lancet. We all agree how ridiculous this is, plus a repeat of history. But shouting into twitter is not enough. We need to make sure a strong reply has the same audience @davidtuller1 @keithgeraghty @microbeminded2 @VirusesImmunity @JanetDafoe

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

I'm starting to feel hopeful that more and more #physios are learning the lessons about #Dysautonomia #PEM #Longcovid #ME and changing practice. After the dysautonomia talk I have had lots of #physios contact me. Thank you @thecsp @PhysiosForME Next talk @EndPJparalysis

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

@Dr_M_Guthridge Thanks for reinforcing the message about ex physiological changes in #pwme . Don't forget the recent study related to mitochondrial changes too. #physios please take note. We are sharing this message worldwide, from USA, Australia to the UK. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Demoralising to see that certain advocates for #GET have such large twitter followers and the backing of @bmj_latest . How do we get our message out there? Why do people not see the potential harm that could be done to #LongCovid . Learn the lessons from #pwme @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

I've recently been emailed by a person with #ME to say that they went to see a #physio who did an exercise test and wore a heart rate monitor. This made the person relapse. The physio apparently said this was on the advice of @physiosforme . This is incorrect we have never advised

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Just wondering about setting up a journal for #MyalgicEncephalomyelitis to provide a space for #ME research to be published. Is this already available @PhysiosForME @keithgeraghty @davidtuller1 @s4me_info @MEAssociation @MEActNet

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

2. The following day she had severe pain throughout her body, brain fog, headache, couldn't sleep and this got progressively worse the next day including swollen glands and flu-like symptoms. Occ when she takes Doxycycline she has sign reduced symptoms and can do so much more...

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Really pleased we've had a chance to speak to over 400 cardiorespiratory physios about rehab of #longcovid #longhauler learning lessons from the #ME population. Thanks to @AHPLeader @PhysiosForME Please see for more info

Cardio-Respiratory Rehab COVID19 Update: Goverment Update and When...

null

www.youtube.com

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Perhaps a signed letter in the @TheLancet by all the wonderful @longcovid researchers @microbeminded2 @VirusesImmunity @resiapretorius @dbkell @JanetDafoe @dysclinic @PutrinoLab etc

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Dr Nicola Clague-Baker

@ClagueNjc36

5 years

So I can now officially call myself a Dr. Only took 5 years and 3 months!

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

2. It is NOT a method to push people into a certain HR zone - this concept relates to cardiac rehab and is HARMFUL for #pwme and #longCOVID DO NOT push #pwme or #longCOVID into exercise LISTEN to #pwme and #longCOVID they know their bodies, they are the experts @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

11 months

Got my copies in the post!

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

3. If she was deconditioned she wouldn't be able to do so much more on Doxycycline. She was talking seriously this holiday about going to Switzerland to 'do it properly and to be able to say goodbye properly to her daughter'. She's not depressed just had enough of 30 yrs of #ME

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Fantastic news Open Medicine Foundation (OMF) is thrilled to announce an anonymous, $1,000,000 grant to fund a collaborative investigation of the relationship between COVID-19 and the possible trajectory to #MECFS @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

8 months

Can I introduce two of my MSc #physio students - @evechhhh and @EmilyMcBLiv who are working on two #ME projects. I thought you might want to welcome them to the community #pwme @physiosforme @sunsopeningband @MEAssociation @remissionbiome

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Very pleased to be asked to present our work at the 2022 International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) @PhysiosForME Thanks to @MEAssociation

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

Pleased that we have had all three of our abstracts accepted at the Chartered Society of Physiotherapy conference in November. Time to spread the word about #ME #itisnotanxiety #donotuseGET @PhysiosForME thanks to all participants with #me @MEAssociation @sarahftyson @helendawes2

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

@doctorasadkhan My concern is that people with #longcovid without #pem will be recruited. A psych and physio programme will be devised and then they will claim this is appropriate for everyone with #longcovid including those with #pem

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

@MECFSNews As a #physio there is no training about #ME . There is a drive to psychologise some conditions. We are taught exercise is the answer. Time for change. I'm proud to say we are teaching all #physios about #LongCovid and #ME @LivUniPhysio @PhysiosForME @thecsp @WorldPhysio1951

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Dr Nicola Clague-Baker

@ClagueNjc36

5 years

Passed my PhD viva today with corrections. Plus heard I got my promotion to Assoc Prof. What a day! What a rollercoaster year. Life gives and life takes away. Just feel a bit numb.

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

This thread has opened my eyes to the fear that #pwme have of getting old.

Henry Anderson

@macanders

2 years

My Aunt died in an old peole’s home. In the year before she died she had a massive ME relapse. By that point she couldn’t communicate. They kept trying to get her up and move her around, We constantly pleaded for the nursing staff to let her rest.

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

@PaulGarnerWoof Why do you continue to support the discredited #PACE trial. #GET as defined in the manual, has rigid increments, does not allow flexibility. It increases duration and then intensity. There is no recognition of #PEM . #GET should not be used for #ME or #longcovid with #PEM

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Dr Nicola Clague-Baker

@ClagueNjc36

10 months

I'm really pleased to report that I have three MSc physio students @LivUniPhysio who will be helping with our #ME studies. Good to see such interest in #ME in the new generation of Physios @PhysiosForME @thecsp @thecspstudents

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

An update - we have now submitted a reply to the Lancet. If it is published we will let you know. Thanks to all that wanted to contribute, thanks particularly to @davidtuller1 @dysclinic @sarahftyson @darrenabrown @sunsopeningband @SimonDecary @PhysiosForME

Dr Nicola Clague-Baker

@ClagueNjc36

2 years

We need a reply in the Lancet. We all agree how ridiculous this is, plus a repeat of history. But shouting into twitter is not enough. We need to make sure a strong reply has the same audience @davidtuller1 @keithgeraghty @microbeminded2 @VirusesImmunity @JanetDafoe

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

#WorldPhysio2021 @darrenabrown #longcovid is not caused by mental health issues, it is a biological disease. There will be anxiety, depression, PTSD, particularly those who have been in ITU and healthcare professionals. This is the same for #pwME . Thank you

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

So proud of everything we have achieved over the last four years. So determined to advocate for and support all #pwme . So determined to improve the care of all #pwme (and #longcovid ) through educating #physios and #ahps and by progressing biomedical research @PhysiosForME

Physios For ME

@PhysiosForME

1 year

It is our four year anniversary! 🥳 We've written a summary of our work over the last 12 months and what we're aiming at in our fifth year 😊

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

@PaulGarnerWoof This study has no mention of #PEM . If a participant with #longcovid can manage 2 x 50 minute exercise programmes a week without #PEM they do not have #pvfs . This programme cannot be applied to all people with #longcovid @LongCOVIDPhysio @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

At last we are starting to see studies differentiating between ME/CFS and CFS. #ME is different and responds negatively to exercise @PhysiosForME

ME/CFS News

@MECFSNews

3 years

2-day cardiopulmonary exercise tests in men with unexplained fatigue and men with #MECFS . The two groups show different responses: the ME/CFS group declined on the second test while the fatigue group improved

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Over the last few weeks I've been interviewing #pwme online in Germany, US, UK and Aus about their experiences of #HRmonitoring and #tVNS . Thank you to all. I am continually amazed at their resilience and ability to self manage. A sign number have spoken to me from their beds 1/2

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Excellent news - Dr. Rosa Maria Pari Ñaña of Brigham & Women’s Hospital and Dr. Dan Wilkinson of the University of Nottingham have each been awarded prestigious grants for ME/CFS research by the Department of Defense’s Congressionally Directed Medical Research Program.

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

#pwme we are planning a podcast about pacing. There is very little research related to pacing, how do you use pacing and what advice would you give to #LongCovid #longhaulers #covid1in20 . It would be great to hear your experiences @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Thank you all for completing the Pacing with a HR monitor survey - 515 responses in 3 weeks. A thread of some of the main results which will be taken to the NICE roundtable. We will produce an article and take the results to a number of conferences next year. Thanks @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

...the previously reported reduction in mitochondrial function in ME/CFS is not due to deconditioning... results indicate that there is a defect in the glycolysis and/or OXPHOS pathways that leaves patients cells unable to produce adequate levels of ATP.

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

As soon as the guidelines are published we will be contacting @thecsp to ensure #physios are appropriately trained, whether in ME/CFS clinics or anywhere #physios treat #pwme - community, msk, neuro, rheum, paeds and so on. #physios #updateyourknowledge @PhysiosForME

Tina Rodwell #TeamPatient🇺🇦🕊🌎🕊💞

@TinaRodwell1

3 years

GET maybe gone but GAM is now on 🤦‍♀️

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Dr Nicola Clague-Baker

@ClagueNjc36

7 months

Our book has gone back up the physio book charts. People buying for Xmas maybe. Thank you to all. Let's hope this means an improvement in the care of all #pwme and #longcovid @PhysiosForME A Physiotherapist's Guide to Understanding and Managing ME/CFS

A Physiotherapist's Guide to Understanding and Managing ME/CFS

www.amazon.co.uk

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

I have now gathered more info. It seems that the #physio used the heart rate monitor to set a limit and aimed to get the person with #ME to reach that limit. #physios this is INCORRECT. This is not cardiac rehab this is using HRM for #pwme . @PhysiosForME 1/2

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

After a hectic day at the #iacfsme conference on my birthday time to relax by the sea.

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Dr Nicola Clague-Baker

@ClagueNjc36

10 months

Now formally published Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study

Home-based testing protocol to measure physiological responses to everyday activities in ME: a...

Individuals with Myalgic Encephalomyelitis (ME) have shown altered physiological responses during maximum cardiopulmonary exercise testing. However, maximal testing is not representative of the eve...

www.tandfonline.com

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

You need to warn that if fatigue lasts longer than 2 weeks and if people have post-exertional malaise PEM then exercise is very likely to be harmful. Rest, pace, hydrate, heart rate monitoring. Learn lessons from #pwme see @PhysiosForME @MEAssociation

Home | Physiosforme

Physios for ME aim to research, educate and advocate to improve physiotherapy management for people with ME

www.physiosforme.com

JAMA

@JAMA_current

4 years

Patients w #COVID19 are likely to have fatigue and decreased energy for 6-8 weeks. It may be difficult to resume the same activity and exercise as before COVID-19, but it is important to remain active and increase exercise gradually

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

After lots of delays we have now moved to N Wales. Combination of sea and mountains, perfect. Time to learn a new language. Nos da.

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Well done the Daily Mail. Long Covid patients are told to exercise despite crippling fatigue via @MailOnline

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

The world needs to wake up and realise that if #LongCovid leads to #ME then the economic cost is massive. Time to invest the research funds that have been so shockingly low for #ME for decades. @NIHRresearch @NICEComms @LNRCLAHRC @NIHRevidence @NIHRcommunity @PhysiosForME

Millions Missing France

@MillionsMissgFr

4 years

@ClagueNjc36 @Outlier1952 The IOM report (2015) mentions 17-24 billion USD/year in economic losses from ME/CFS. In Europe, EUROMENE estimate them at 40 billion EUR/year by extrapolating from UK data:

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

#iacfsme2022 interesting discussion about #longCOVID and #ME . 43% of #longCOVID cohort at Stanford uni longcovid clinic fit the criteria for #ME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

The dogs enjoying the sunset!

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

My best friend has mod to severe #ME >30 yrs. She feels 50-60% better on Doxycycline. Going to get a test for Lyme. Myhill suggests 3 months intense course alongside other meds which my friend is allergic to. Has anyone had experience of success with Doxycycline? @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

#SevereMEDay2021 #physios #ahps #medics please take note that most people with severe #ME say this was as a result of pushing themselves, physically, mentally, socially. Let's not make the same mistake with #longcovid @LongCOVIDPhysio @thecsp @thecspstudents @WorldPhysio1951

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

A quick skim - The Long Covid self-help guide appears to take the traditional route with a guide to return to physical activity, whereas the Long Covid Handbook appears to be more aware of #pvfs and #ME . Neither seem to mention #pem . Need to read in more detail now @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

This needs a response @PhysiosForME

Long Covid and graded exercise therapy | Letter

Letters: No trials of graded exercise have shown to harm patients, say Dr Alastair Miller, Prof Paul Garner and Prof Peter White, so those with post-Covid fatigue syndrome should not be discouraged...

www.theguardian.com

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

This sounds hopeful. My one question, who will be training the #hcps ? @PhysiosForME would like to offer our support with this @NICEComms

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

As a #physio there is no training about #ME . There is a drive to psychologise some conditions. We are taught exercise is the answer. Time for change. I'm proud to say we are teaching all #physios about #LongCovid and #ME @LivUniPhysio @PhysiosForME @thecsp @WorldPhysio1951

ME/CFS News

@MECFSNews

3 years

Healthcare workers who didn't believe in #MECFS and #LongCovid at first, but now do: What do you think are reasons for this disbelief?

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Dr Nicola Clague-Baker

@ClagueNjc36

11 months

Thank you to @LivUniIPH and @LivUni for publicising our book. We want to spread the word as far as possible so we can educate as many #physios and #hcps about: #ME ; the harm of #GET and ultimately to improve the care of #pwme (and #longcovid ) @PhysiosForME

Institute of Population Health

@LivUniIPH

11 months

Dr Nicola Clague-Baker @LivUniHealthSci has co-authored a new guide for physiotherapists and HCPs on managing ME / CFS ➡️ #pwME #MECFS #LongCovid #physiotherapy #research

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

@guardian This is not saying anything new. It's the usual authors complaining they can't use #GET and #CBT .

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

#PwME would like to collect data on treatments other than #GET and #CBT . If you have #ME /CFS and have used or are using #HRmonitoring to manage your symptoms please fill out this survey. Please share widely. Thank you

HR Monitor Survey | Physiosforme

www.physiosforme.com

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

#pwme #ME - how many of you have had misbelief and a lack of caring from family members and professional carers? Have you had to explain your condition lots of times and still have misbelief? What resources have you used to explain and have they helped? Thanks @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

This is a real slap in the face for #pwme @PaulGarnerWoof . The advice you received early on in your recovery from the #ME community potentially helped you to recover. To turn around now and encourage #longhaulers to push exercise is potentially damaging. @darrenabrown

Paul Garner

@PaulGarnerWoof

3 years

I had Long Covid & met Canadian consensus criteria for ME/CFS. I have recovered: I feel that I have looked down the barrel of the ME/CFS gun and disarmed it. I write this to my fellow longhaulers #LongCovid #MECFS #postviral #longhaulers

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

#LCPForum session on gaslighting. #pwme have had over 30 years of gaslighting. At least #longcovid clinics are not led by psychiatrists. At least that has changed. Learn from #pwme push for #NICE guidelines that support biomedical management and research. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Now recruited 20 participants (4 with #LC and 16 #ME ) for the HRM study. Now also doing follow up visits after 8 wks intervention. Really tricky to coordinate everything due to limited funds, time and equipment. Weekends are gone for 7 months but it's worth it @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

2/2 I want the world to hear their life stories. To understand the devastation that #ME causes. How have they been ignored for so long? It is time for change. Time for more equitable research. @sajidjavid you can make history and change lives. Please follow up on your promises

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Exciting, just completed testing of our first participant. Up at 5.30 and driving for 6 hours but worth it. 19 more to go! Might get one free Sunday over the summer! Thank you to our first volunteer. Thank you to @MichelleBull4 for helping. @PhysiosForME @MEAssociation

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

The limit set is their estimated anaerobic threshold that we DO NOT want them to exceed. #physios DO NOT push #pwme to that limit, you are advising to stay under this threshold so they do not exceed their AT. Please #updateyourknowledge #donoharm @thecsp @thecspstudents 2/2

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Second session @LivUniPhysio - first prereg masters #physio students, today 2nd year #physio students. Looking forward to talking to students @NorthumbriaUni thanks to @SarahMoorePhys Happy to present to any #ahp students. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

@karenphysiocouk Having worked on research related to #ME I can say that the #ME community are highly supportive of appropriate research and a joy to work with. As a researcher, it is so important to listen to the people with the condition. They know their condition. @TheTelegraph_ @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Well done Dr Charles Shepherd @MEAssociation and @bbc5live for raising the awareness of #LongCovid let's hope research can find solutions for all people with #pvfs and #me

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Great to meet 2 out of 3 @PhysiosForME in person for the first time. Missed you @karenphysiocouk . Picking up equipment for our research project. Thanks to @helendawes2 . Final plans to be made with @sarahftyson . Thanks to @MEAssociation for funding.

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Very pleased that we have reached over 2.3K views with our podcast @PhysiosForME . #LongCovid #covid1in20 - rest, pace, plan, prioritise, HR monitoring #physios #HCPs Post Viral Fatigue (PVF), Post Viral Fatigue Syndrome (PVFS) and Myalgic... via @YouTube

Post Viral Fatigue (PVF), Post Viral Fatigue Syndrome (PVFS) and...

PhysiosforME and Dr Charles Shepherd discuss PVF, PVFS and ME. Personal experiences of supporting people with PVFS and ME, how to distinguish between PVF, PV...

www.youtube.com

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Some really interesting talks yesterday at #iacfsme I missed the later ones unfortunately but some of the messages for me 1. Gut dysbiosis esp tryptophan in #pwme 2. 92% of #pwme who did 2 day CPET recovered on average 10 days afterwards, 7% 4-10 weeks. @physiosforme

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

4. The important message is pvfs/ME can be made worse by exercise due to abnormalities in the mitochodria leading to increased anaerobic metabolism. Do not do CV exercise or GET as they have a reduced anaerobic threshold and significant problems with acidosis @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

#iacfsme fantastic talk by Lauren Stiles on tests for dysautonomia. Not just tilt table tests. Really helpful thanks.

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Hats off to Dr Myhill. She really is an amazing advocate for #pwme

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

@TobyOSmith Pacing important. We don't know how people will respond to exercise. Majority of #pwme respond negatively to exercise and sends them into postexertional malaise #pem . Please be careful as the majority of ME sufferers developed their symptoms post viral infection. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

Why do some people have to experience a problem personally before they believe a patient? Where is the empathy?

S Blitshteyn MD, FAAN, Dysautonomia Clinic

@dysclinic

2 years

One of my patients, a cardiologist with #POTS , said that they used to dismiss young women with tachycardia as anxiety until they themselves developed POTS and realized that it had nothing to do with anxiety and everything to do with disabling physical symptoms.

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

HR monitoring study We are pleased to say after less than 2 weeks of recruiting we only need 3 more #pwme for our study. We do need more people with #longcovid to sign up though. See info sheet here: Thanks @PhysiosForME

Pacing with a Heart Rate Monitor pilot study - Recruiting now!

We’re thrilled to announce that a new pilot study is now recruiting: "A pilot study to identify the feasibility for a definitive study that will investigate the effectiveness of pacing with a heart...

www.physiosforme.com

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Well done @thecsp for including #ME training in our frontline magazine. Raising awareness of #ME to potentially 60,000 UK physios @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

#GET is designed firstly to increase frequency then duration then Intensity of exercise. By its v nature it will exacerbate the abnormal ex physiology of #pwme and #pvfs . Use pacing, rest and HR monitoring not #GET @PhysiosForME

Paul Garner

@PaulGarnerWoof

4 years

Agree, Simon. Also make clear to people with #LongCovid what post-exertional malaise is, and to avoid pushing through exercise if present?

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Beautiful. How can anyone think that #pwme don't want to exercise, have a fear of exercise. They absolutely would if they could.

@AnilvanderZee

3 years

One of my favorite solos because it's so slow, zen & understated. Still crazy I was able to this at some point! I still dance in my dreams! 💃😉😎 #pwme #myalgicE #millionsmissing #severeME #POTS #spoonie #art2cureME #canyouseeMEnow #balletdancer

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Dr Nicola Clague-Baker

@ClagueNjc36

2 years

My last child gone to uni. More time working on #ME . Good luck to my wonderful son

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Dr Nicola Clague-Baker

@ClagueNjc36

4 years

Really pleased that our website has been cited as a reference source in the latest review by @NIHRevidence for #longcovid #longhaulers Perhaps slowly the message is getting through @PhysiosForME @thecsp @KMiddletonCSP @ekstokes

Home | Physiosforme

Physios for ME aim to research, educate and advocate to improve physiotherapy management for people with ME

www.physiosforme.com

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

Tomorrow is my last day @uniofleicester . Thank you for supporting me through my PhD journey and for giving me 15 enjoyable years with the wonderful students @UoLPhysio . I look forward to moving to @LivUni and meeting all their lovely students @LivUniPhysio

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Dr Nicola Clague-Baker

@ClagueNjc36

3 years

@PaulGarnerWoof @NICEComms There is so much to say here @PaulGarnerWoof but my main comment is that at last @NICEComms are listening to #pwme who have been harmed by #GET . How much harm should be acceptable for a treatment? Imho none. @PhysiosForME

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Dr Nicola Clague-Baker

@ClagueNjc36

1 year

HR monitor study @PhysiosForME Final data collection completed today Over 7000 miles driven in 8 mo 47 #pwme + #LC recruited 30 f/u interviews so far Time for some analysis. Thanks to all the participants, @MEAssociation , @LivUni @visible_health and Stockport #ME group

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Dr Nicola Clague-Baker

@ClagueNjc36

11 months

It all comes at once. A second research paper accepted for publication as well as the book. Still working on at least 4 more publications and 2 research proposals. Thank you to all #pwme for your support as always + @MEAssociation @sarahftyson @helendawes2 @LivUni @LivUniPhysio

Physios For ME

@PhysiosForME

11 months

We are thrilled to announce we have had another paper accepted for publication! "Home-based testing protocol to measure physiological responses to everyday activities in ME: A feasibility study" will be published very soon as open access 🎉

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Dr Nicola Clague-Baker

@ClagueNjc36

9 months

Thought I'd retweet this to keep the momentum going. It has remained in the top 50 physiotherapy books since it was released on 21st August. I hope that means #physios are reading it and updating their knowledge. We hope to announce an offer of some free books soon. @PhysiosForME

Elizabeth Ruth (she/her)

@lizruth83

9 months

The wonderful @PhysiosForME have published their book! This is one that I have waited on the edge of my seat for. If you've got any interest in ME/CFS this will be worth a read: A Physiotherapist's Guide to Understanding and Managing ME/CFS

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