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Jetmoo
last online: 11/13, 0:06
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Any thoughts on this please?

Dear. Dr,

In response to your recent letter dated, ….., the emails have not been in regards you or to do with my care so I think it is inappropriate for you to comment on them.

The emails have been attempts to collaborate to discuss how to resolve the issues of poor communication at the surgery. However due to the poor communication at the surgery I have needed to prompt responses. The multiple prompts have not been acknowledged. Agreed times for communications have been made with the surgery and these have been ignored.

If the surgery are more responsive then I will not contact them as often. Given that I am still waiting for some of my data request from November last year, which Martin knows about, I think it is unfair of you to put boundaries up. I also need to rectify my data and if the surgery are unwilling cooperate then I may need to make complaint aswell.

I feel there is a lack of trust towards me at the surgery and hostility which is provoking unfair treatment towards me. Mistakes at the surgery have been made but rather than admit them and apologise I feel I am scapegoated out of fear. I would like to peacefully negotiate and for us each to work together. I’d like to apologise if I need to. This is not possible when people are unwilling to engage with me.

We have all made mistakes in our lives. My view is that mistakes are lessons in disguise. Much can be learnt from them. It takes courage to admit mistakes. The humility of acknowledging ones imperfections brings respect. Apologising eases emotional distress. However no faults are being admitted to. Id like to ask that instead of denying empty promises and faults have occurred that people are willing to provide explanations and apologise. And likewise, if any require explanations and apologises from me then I am open to this. I am imperfect as anyone else is.


Yours sincerely

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Since writing this post Jetmoo may have helped people, but has not within the last four (4) days.
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Jetmoo
last online: 11/13, 0:06
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Hi helpbot would u like some of my biscuits? Can you make me a coffee first though?

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Jetmoo
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Please do not deny that Graded Exercise has harmed people. It is true, as you say, that some people believe it is helpful. However many do not believe so.

There are many criticisms of the PACE trial. It was done unblinded. There were no objective measures. Mid trial the PACE investigators changed their protocol methods of assessing their primary outcome measures of fatigue and physical function. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol. The PACE investigators based their claims of treatment success solely on their subjective outcomes. They violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be adequately informed about researchers possible conflicts of interest. The main investigators have had financial and consulting relatinships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work.They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This raises concerns about whether the consent obtained from participants were legitimate.

Dr David Tuller has written about futher problems with PACE in lots of detail in his Trial by Error blogs (1). This can be found at www.virology.ws/2015/10/21trial-by-error-i/

Virology Blog(1): "This re-analysis demonstrates that the previously reported recovry rates were inflated by an average of four-fold, Futhermore, in contrast with the published paper by he trial investigatoes, the recovery rates in the cognitive behavioural therapy and graded exercise therapy groups are not significiantly higher than with specialist medical care alone."

More criticisms of PACE have been made by Professor Malcome Hooper and Countess of Mar can be found at www.meactionuk.org.uk/Update-on-the-PACE-Trial-...
and in the paper Magical Medicine:How to make a disease disappear (2)

Rebecca Goldin offered her criticisms here (3) and mentions that "How can we generalize to the patients with ME?CFS who are too sick to travel to the hospital, if all PACE participants are able to attend hospital visits?

How do we contextualze major changes in protocol impacting resuls, and the unwillingness of the PACE authors to provide outcomes based on he initial planned data analysis? Do these changes impact patients in particular branches more than in others, biasing the study's outcomes?"

The evidence of harm of CBT and GET to ME sufferers has been documentted by Tom Kindlon and can be found here: www.ncf-net.org/library/Reporting%20%20Harms.pdf.

Carol Monaghan: " PACE trial, which relied on patient self-reporting, rather than measureable physiological parameters. Furthermore, when the results were not a expected, rather than revise the orignial hypothesis, the investigators simply changed the success criteria. Thus patients participating in GET who had deteriorated during the study were considered recovered. There are, of course, ways of measuring the physiological impact of exercise. The two day cadiopulmonary exercise test onjectively measure post - exertional malaise"..."a person with ME can perfrom adequately - sometimes even well - on the first day, but can have greatly reduced cardiopulmonary function on the cond. The test requires the participant to exercise on a static bicycle, and allows data on xygen consumption, workload and gas exchange to be measured. The identical tests, seperated by 24 hours, must be carried out to properly mesure the impact of exercse. Results from a single test could be interpreted as a lack of fitnes. Two tests change that to something quite different. A healthy person will perfrm better the second time; as ME sufferer will most likely be worse."..." One wonders why the DWP would fund such a trial, unless it was seen as a way of removing people from long-term benefits and reducing the welfare bill."(5)

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Jetmoo
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(1) Tuller D. Trail by error: the troubling case of the PACE chronic fatigue sundrome study. Virology Blog 2015
Www.virology.ws/2015/10/21/trial-byerror-i (Accessed 28 September 2016)

(2)Hooper M. Magical Medicine: how to make an illness disappear. February 2010.
Http://www.mectionuk.org.uk/magical-medicine.pdf (accessed 28 Septemer 2016)

(3) Goldin R. PACE: the research that sparked a patient rebellion and challenged medicine. Stats.org 21 March 2016. http://www.stats.org/pace-research-sparked-pati... (Accessed 28 September 2016)

(4)Kindlon T.Reporting of harms associated with graded exercise therapy and cognitie behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME 2011;19(2): 59-111
www.ncf-net.org/library/Reporting%20of%Harms.pdf (accessed 29 September 2016)

(5) https://hansardparliament.uk/Commons/2018-02-20...

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Since I got ME I have lost persional relationships mostly down to disbelief and I have become isolated. Social media is how I have socialised. I have become a part of the ME communities online. I now have many friends with M.E. Many have been harmed by GET. Some have had DOLS placed on them unnecessarily, forcibly removed from their homes and sectioned and forced to have GET. This includes children. I have friends who have not recovered from GET decades later.

I have a friend who goes in and out of consciousness due to pain.
Another lives in a carehome and is abused every day.
Another has no support from family of social services and struggles to survive daily.

I have a friend who spent 2 years screaming into a pillow until a new Dr gave her morphine she needed. However still in pain with no life and with no hope of recovery she took her own life 2 years ago.
There is a high suicide rate for those with ME. ME deaths are under recorded. Emily Collinridge for example, despite violently vomiting, violent convulsions, doubly incontinent with syringe drive and tube fed. The coroner said there was a "lack of physical symptoms."

When people undermine decades worth of harms caused by this injustice it perpetuates the problem. It is emotionally distressing. It is like telling a person who has been *****raped that they imagined it.

It is my belief that all persons should have support. No one should have to suffer this way. The only way to improve things for people with ME is to acknowledge there is a problem, not deny it exists. Then to become aware.

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Jetmoo
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Emma Lewell - Buck:
"the sparse funding for ME research, which at presentstands at a pltry £1 for every sufferer."

Sharon Hodgson:
"The Government do not fund research and clinical cre for people with ME at the rate they do for other serious prevalent diseases"..."the average spent on researh for a person living with ME is just £1 a year"

Http;Hansard.parliament.uk/Commons/2019-01-24/d...

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Jetmoo
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Research for ME is underfunded due to the stigma of ME. One way to improve the chances of ME research being funded is to acknowledge it is needed and for peoples attitudes towards ME to change. It is a misconception that there is little researh of ME. It is just overlooked by many. It is important that people are aware of flawed research in order to make way for relevant research.

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Jetmoo
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@BA1
@PepperJ

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Jetmoo invited 1 user .
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Cregyn
last online: 01/07, 18:55
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I'd love to offer some thoughts on this, Jetmoo, but my brain is not able to process this much info in one go at the moment, sorry.

Seems like heavy stuff.. Hope you will get all you need.x

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Jetmoo
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Ok @Cregyn
@BA1 this is shorter, how about this? :

Dear. Dr,

In response to your recent letter dated, ….., the emails have not been in regards you or to do with my care so I think it is inappropriate for you to comment on them.

The emails have been attempts to collaborate to discuss how to resolve the issues of poor communication at the surgery. However due to the poor communication at the surgery I have needed to prompt responses. The multiple prompts have not been acknowledged. Agreed times for communications have been made with the surgery and these have been ignored.

If the surgery are more responsive then I will not contact them as often. Given that I am still waiting for some of my data request from November last year, which Martin knows about, I think it is unfair of you to put boundaries up. I also need to rectify my data and if the surgery are unwilling cooperate then I may need to make complaint aswell.

I feel there is a lack of trust towards me at the surgery and hostility which is provoking unfair treatment towards me. Mistakes at the surgery have been made but rather than admit them and apologise I feel I am scapegoated out of fear. I would like to peacefully negotiate and for us each to work together. I’d like to apologise if I need to. This is not possible when people are unwilling to engage with me.

We have all made mistakes in our lives. My view is that mistakes are lessons in disguise. Much can be learnt from them. It takes courage to admit mistakes. The humility of acknowledging ones imperfections brings respect. Apologising eases emotional distress. However no faults are being admitted to. Id like to ask that instead of denying empty promises and faults have occurred that people are willing to provide explanations and apologise. And likewise, if any require explanations and apologises from me then I am open to this. I am imperfect as anyone else is.


Yours sincerely

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Yorick
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i'm no expert.. but with fatigue cant these sort of stimulant/alert medication be some kind of help?

Adderall or modafinil?

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Jetmoo
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NacthoMan wrote:
i'm no expert.. but with fatigue cant these sort of stimulant/alert medication be some kind of help?

Adderall or modafinil?

Thank u but no. Its complicated.

Jetmoo edited this post .

Any thoughts on this please?¬ ¬ ¬ ?¬ ¬ Dear Dr H, ¬ ¬ I found our phone call to be distressing. I felt that you were defending Graded Exercise as treatment for M.E. There have been many world wide with ME who have been harmed by Graded exercise and CBT. The PACE trial only used patients who could to travel so any results can not be generalised to myself.¬ ¬ GET ¬ Graded exercise supports the view that people's muscles have become deconditioned due to lack of exercise and this causing M.E. However I became ill when I was working 33 hours per week in a care home. I was very active until I became unwell. I attempted to remain in work by reducing my contract to 22 hours weekly. I knowingly risked having reduced sick pay as a result, because I genuinely wanted to stay in work. I hope you understand that motivation was not an issue for me.¬ ¬ COUNSELLOR¬ I was recommended to see a counsellor around the time of my diagnosis and I was discharged with her saying I had a good head on my shoulders. ¬ ¬ CBT¬ CBT as treatment for M.E is based on the view that people with ME have faulty illness beliefs related to activity and to challenge these. I hope you understand that my symptoms are not faulty illness beliefs. There is much research that supports my symptoms have a physiological basis. ¬ ¬ NEUROTRANSMITTERS¬ I understand that mental health can cause physical symptoms and visa versa, however ATP is needed in order for neurotransmitters like dopamine and serotonin to work. Antidepressants are limited in their usefulness. When having too high a dose of antidepressants it has caused agitation in the past because it has increased motivation but I have lacked the energy to act on the motivation. Using too much ATP in my muscles results in less ATP in my brain and this can affect mood. ¬ ¬ SECONDARY DEPRESSION¬ I have had secondary depression from ME. However it has been under control. If one was concerned about mental health I believe the best way to approach it would be to improve levels of ATP. Otherwise it is like shovelling snow when its still snowing.¬ ¬ DISTRESS¬ I can get distressed at times. Please understand distress and depression are not the same. I recognise triggers for distress and am happy to share them. Please also know that its likely I have autism and I feel M.E exasperates it.¬ ¬ CBT¬ I dont find CBT to be helpful. Relaxation techniques are limited in their helpfulness as I struggle to remain focussed. I cant listen to relaxation music. I cant visualise. ¬ ¬ MH PROFESSIONALS¬ I dont find mental health professionals very helpful. The questionnaires are not valid to measuring mood for people with ME since symptoms cross over. ¬ ¬ CARERS¬ I prefer emotional support from carers. They can hold my hand when I cant talk. It concerns me that other professionals may think I refuse to talk rather than being unable. Visitors also use too much energy and make me worse. Carers have more time for me to communicate with them.¬ ¬ CONCERN¬ The concern I have with talking about mental health is when professionals attribute physical symptoms to being caused by mental health when they are not. Because this reduces chances of having relevant tests and treatment and would hinder improvement. The wrong treatment would be harmful. ¬ ¬ SECTIONED¬ Many with ME have been sectioned to forced them to have GET. People have been forcibly removed from their homes including children and forced to have GET and CBT. So naturally it is distressing to discuss this unless professionals have a good understanding of M.E.¬ ¬ EXERCISE¬ Dr,¬ ¬ In Myhillresponse does mention exercise in her book but only when the body is ready and specific exercises. Research shows anaerobic respiration causes P.E.M for ME.¬ ¬ REASSURE¬ Please can you reassure me that no one will try to forceyour recent letter dated, ….., the emails have not been in regards you or to do with my care so I think it is inappropriate for you to comment on them.¬ ¬ The emails have been attempts to collaborate to discuss how to resolve the issues of poor communication at the surgery. However due to the poor communication at the surgery I have needed to prompt responses. The multiple prompts have not been acknowledged. Agreed times for communications have been made with the surgery and these have been ignored.¬ ¬ If the surgery are more responsive then I will not contact them as often. Given that I am still waiting for some of my data request from November last year, which Martin knows about, I think it is unfair of you to put boundaries up. I also need to rectify my data and if the surgery are unwilling cooperate then I may need to make complaint aswell.¬ ¬ I feel there is a lack of trust towards me at the surgery and hostility which is provoking unfair treatment towards me. Mistakes at the surgery have been made but rather than admit them and apologise I feel I am scapegoated out of fear. I would like to peacefully negotiate and for us each to work together. I’d like to apologise if I need to. This is not possible when people are unwilling to engage with me.¬ ¬ We have GETall ormade CBT?¬ Pleasemistakes in our lives. My view is that mistakes are lessons in disguise. Much can yoube reassurelearnt from them. It takes courage to admit mistakes. The humility of acknowledging ones imperfections brings respect. Apologising eases emotional distress. However no faults are being admitted to. Id like to ask that instead of denying empty promises and faults have occurred that people are willing to provide explanations and apologise. And likewise, if any require explanations and apologises from me thatthen you understand that my weightloss is because I lack physical support?¬ ¬ Dr H has recorded that i need physical support and prompting. I cannot understand why you feel I am notopen wanting to eat. I want to eat. But I want to do more than only exist. I have to make choices where I use my limited energy. ¬ ¬ Please dont interpret this letter as a personal attack. ItI am imperfect as anyone else is.¬ ¬ ¬ Yours for my own reassurance and to prevent distress again in future.¬ ¬ Thank you¬ Yours sincerely ¬ ....

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Jetmoo
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@Yorick can i just give u another poke to read my edit? Since ur online?

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Cregyn
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Sorry for late reply; is it about them complaining that you keep contacting them too often? 😄

I do not know where you are trying to get with that response, Jetmoo. You don't need to justify yourself.

I'd just say - I keep persisting to contact the surgery as I am in a desperate need to get a positive response with so and so.

My hope is that the surgery has my best interest at heart, and I will receive the right response.

I apologise if my previous emails have not been clear enough?


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